Original Stories

Patient Stories from the Original Website that was active for over five years.

ID: 305

Member: Tran Henry

Email: thanhthanhn2000@yahoo.com

Diagnosis:

Date: 12/9-2002

Age: 21

Remission: True

Story: I have found Blood-tonic and Restore-Immune . My 21 years old son has have aplastic anemia and hepatitis B. He has been on Cyclosporin, Methoraxate and nlood transfusion for 8 months without remission. We searched for BMT without success ( no proper donor). We found Blood-tonic and Restore-immune in the net. It is botanical products from a company in San Jose ( Get Well International). My son took products since last October, his blood counts were normal in 2 months and remained good 5 days ago. We were totally surprised with the efficacy of blood-tonic and restore-immune. Had anyone from this group tried these products and what were your experiences? Thanks for reading. Henry, father of AA patient


ID: 307

Member: Melanie Rose

Email: melrose_barrameda@hotmail.com

Diagnosis:

Date:

Age: 18

Remission: False

Story: My aunt was the one diagnosed with AA a year ago, doctors said that she acquired that due to her exposure to chemicals and pesticides. My aunt loved gardening, she uses fertilizers and all those complicated stuff. And all these foreign things have acquired in her body…that also inlcludes the canned good,noodles with so much salt, junk foods…artificial foods on short. Right after her diagnosis every one in our family changed our eating habits. I guess you can say that we have been conscious to live our life now healthily.


ID: 309

Member: Behnoush Babzani

Email: Prsinmonky@aol.com

Diagnosis: Aplastic Anemia with BMT

Date:

Age: 21

Remission: False

Story: i was diagnosed with aplastic anemia at the young age of 12. i was given treatment like atg and cyclosprine. my counts went back to normal and i was in remission for 7 years when iwas diagnosed again in august of 2003. my doctors insisted that this time around iwaste no time and immediately have a bone marrow transplant, if i were to receive the treatment i had the first time around, it could have potentially been fatal.yet, at the same time, if i have the transplant i was told it could be fatal as well. my brother was a perfect match. i was sent to standford hospital and given chemo therapy for a week, and on January 7th 2004 i had my transplant.i had a bad reaction to the bone marrow so the transplant continued through the 8th of january. i was in the hospital for 42 days. it was the most difficult yet soul strengthing experience i had ever had to deal with.i was still on treatment for about six months after transplant. it is 8 months post transplant and i feel great, my counts are returning to normal, or as normal as they can get. i still see the doctor very often and get biopsies very often. i am still not in the clear of graft versus host disease but i stay positive and pray this transplant has cured my aplastic anemia and i can return to a healthy and normal life. i have been able to return to school and most everyday activites. i am grateful… please contact me if you have any questions regarding my experience with AA or BMT! www.Behnoush.org


ID: 310

Member: Bruce Lande

Email: bruce.lande@roadrunner.com

Diagnosis:

Date:

Age:

Remission: False

Story: This is the short version of my battle with AA – I am the author of and maintain the website http://aplasticcentral.com. For the full version, click on My Journey or the picture of me frolicking on the beach with my family at the Home page. September 11, 2003 Update I was diagnosed with AA in January of 2001. Conventional AA treatments were unsuccessful in defeating this ugly illness called Aplastic Anemia. I received two doses of Rabbit Serum (ALG) tried cyclosporine and all of its related side effect medications. In July of 2001, I gave up on the toxic drugs and went to the Environmental Health Center in Dallas, TX in an attempt to rebalance my immune system since AA is essentially an autoimmune disorder. (As a side issue, be aware that my insurance company is refusing to pay for this treatment even though it is working.) I have essentially designed my own treatment program borrowing from Dr. Rea at EHCD, Dr. Sherry Rogers, my wife, Marla Brown and many others who have contributed their insights. I have used myself as a human guinea pig and am very pleased with the results. I have a quality of life that is better than before I became ill and I am convinced that had I stayed with the standard protocols or gone through a BMT I would either be dead or crippled. My counts have stabilized (although still below normal) and I have been transfusion free since May 24, 2002. My physical and mental abilities are up to about 95% of my old self. Prior to my decision to abandon the conventional approach, I had endured two serious blood infections, had 5 Bone Marrow Biopsies, 5 different cental lines, self administered daily desferol and almost died on three separate occaisions. I think that as AA goes, I have just about seen and done it all. (To be correct, I have not had a BMT or Cytoxan – the downside risk scared me off). I have written a book about my experience. There is a link to the previw on the home page. Dr. Jeff Kirshner of HOCNY saved my life and I am now working to regain control over it. I was subjected to two rounds of Rabbit Serum, septocemia, more meds than I could count and then in August of 2001, I finally listened to my wife who is an RN and has taught herself about alternative healing methods. I am now following a regimen that is considered an alternative to modern medical treatments. This alternative approach is working for me and many others. I recommend that you at least consider it before you subject your body to chemotherapy, ATG, Bone Marrow Transplants and other such invasive techniques. And the best part, is you can do it all for free. I am not selling anything except maybe my book (but most of the content is on the site if you want to save the the $15.) You don’t need to buy any magic formula or purchase any expensive equipment. Just take charge of your life, follow the protocol I have described and discipline yourself to realize it will take 6-12 months before you see results. I was initially very skeptical about the alternative approach as you will see if you read my full journal, but as of today, I am golfing 5-6 days per week, visiting with my grand child, walking, talking and taking out the trash. At this same time in 2001, I was virtually flat on my back in a hospital bed being subjected to all sorts of ugly experimental approaches to healing my body. I now know that the healing started when my wife and I took control. I changed my lifestyle from type A to a much more relaxed approach, changed my diet from McD’s to “grains,greens and beans”, am detoxifying my body and eat only organically grown vegetables and drink only pure spring water. It may sound boring, but this approach has saved my life and restored me to about 95% of my formal self in about a year. My counts are still low (WBC=2.3, RBC=2.4, HGB=10+, HCT=27-29, Platelets 13-15), but I am completely transfusion independent. For more details and the blow by blow, read on and explore the site in it’s entirety. BDL 9/11/03 My full story is accessible from the home page as My Journey http://aplasticcentral.com/AA_Members/bruce.htm


ID: 311

Member: Sandy

Email:

Diagnosis: Aplastic Anemia

Date:

Age: 56

Remission: True

Story: I have 2 blood disorders. the first one caused the SAA so I am not sure I am the best person to base things on. I have LGL, leukemia – Large granular lymphocyte and the leukemia is not the fatal type. The LGL is very rare which makes it soo diff to know what will work. I do know another person with the same thing I have and the cytoxan worked for her !!! I met her on the lsitserv- Ali and her hubby Kevin Holder I think. she is a bit younger than me. I could not tolerate the cytoxan. It upset my stomach so very much !!!!! I have been thru the cyclosporine, then cytoxan, then ATG, then methotrexate and now no treatment. Letting my body chill for a while. I also now have iron overload and am on the desferal yet get it thru my port. Many others use the soft something needles in their stomachs for 3 days at a time. I am 6 nites on and one off !!! My life has really changed with these 2 blood d/o’s. I am already a breast cancer surv of 6 yrs. the chemo I had in 1995 prob kicked the LGL into action when all my blood levels dropped big time. I am always low wbc, platelets and crit. Not sure I helped you. do wish you much luck !!!


ID: 312

Member: EVAN SLEEMAN

Email: ARAGONMUSIC@TELUS.NET

Diagnosis: Aplastic Anemia

Date: FEB. 2ND,1989

Age: 73

Remission: False

Story: IT MAY BE TOO LONG, LET ME KNOW YOUR LIMITS.


ID: 313

Member: erica smits

Email: erica.smits@student.uva.nl

Diagnosis: Aplastic Anemia

Date: january 2000

Age: 21

Remission: False

Story: I got diagnosed with severe aplastic anemia in january 2000. It was the first time I eveer heard of this disease. It was the first I was really ill and in a hospital for it. So loads of new experiences for me. I was treated with ATG, G-CSF, cyclosporine and lots of all kinds of medications. The ATG seemed to be working and in september I was going to college again, taking things slow. Things went better, my cyclosporine less and my trust more. Until the beginnings of june. My bloodcell-counts had dropped and the cyclosporine went back to 275 mg a day. A big disappointment. I just got used with being a student instead of a patient again and now I was back where I started. Now, half july, my counts have stopped dropping, the bonemarrow shows nothing funny, other than heving aplastic anemia. Today, it was thirteen days ago I had my last tranfusion with platelets and my hematologist (dr. Barge from Leiden Medical Centre) is optimistic. I am in good spirit and I believe I will get better.


ID: 314

Member: Joe Jacobi

Email: josephjacobi@yahoo.com

Diagnosis: Aplastic Anemia

Date: 10/99

Age: 49

Remission: True

Story: I was diagnosed with aplastic anemia 10/99 after several weeks of feeling extremely tired, throbbing all over, and becoming pale and then almost yellow. I was advised by my hemotologist of the work done at NIH on aplastic anemia. I met with Dr. Neil Young at NIH. He advised me that I should consider being treated in one of their trials before considering any bone marrow transplant. My aa was severe and I was receiving transfusions for red blood and platelets. My family and I decided I would enter NIH and get randomized to either ATG/cyclosporin or Cytoxin/cyclosporin. I was admitted mid Nov. 99, and received ATG/cyclosporin. I spent about 10 extra days there due to a skin reaction and fever. They still don’t know what caused the skin rash. I returned home to New Jersey in Dec. 99 and wound up in the hospital with a very serious case of pneumonia. They said it wasn’t pneumocystis, but they treated me as if it was. The good news is that after leaving the hospital in January 2000, things got slowly better. I had a problem with tolerating the cyclosporin. It was beginning to affect my kidneys. But NIH lowered the dosage and that problem was solved. By March of 2000, my platelets stabilized and I did not require any more platelet transfusions. By June of 2000, I did not need any more red blood cell transfusions. On my visit to NIH in May of 2000, they also put me on MMF. Today, my bone marrow is working, twice as hard as normal. But I am only at around 10.5 to 11 hemoglobin, and about 55,000 platelets, due to having PNH cloning. I am tapering off of the cyclosporin and then the MMF. In November I will be back at NIH for my 2 year checkup. I don’t know what the future holds, but I thank the Lord that at least for now I am feeling better and appear to be in remission. I wish well to everyone who is struggling with aplastic anemia and look forward to hearing from anyone. Feb.2002-2yr. checkup at NIH went well in Nov. Still on MMF. I had highs of 11.4 hemoglobin and 90,000 platelets at Dec. checkup w/hemotologist. But counts have dropped a little since then. I am now at 10.4 and 80,000. Hemotologists says don’t worry, but I still do. I am hoping March counts do not drop, then I won’t worry. Oct.2002-my counts continued to drop each month. I decided I should find out what I should do, since nobody at NIH called to find out what was going on and my hemotologist didn’t have a clue. So much that has to be done has to be done by ourselves. NIH suggested that I go off of the MMF. It wasn’t helping me keep my counts up after going off of the cyclosporin. It seems to me that once the cyclosporin was completely out of my system my counts began to drop. I was put back on 75mg 2x a day. This seems to have stabilized my counts, but they are well below what they were in November. I hover around 9hg,35-40,000 platelets, and 3.2-3.8 wbc. I will be going to NIH November 19 for my 3 year checkup and will have many questions. However, my wife says we aren’t going unless they capture that sniper. For those of you who don’t know, NIH is located in Bethesda, MD, which is around the area where the sniper has been striking. Just something else to worry about! By the way, I thought that I may have had a problem with possible cancerous nodules in my lungs. Fortunately, these appear to be something else, since they have not grown in three months. This is a relief because the next step would have been surgery to inspect some of them.


ID: 315

Member: Mindy Pember

Email: mepember@verizon.net

Diagnosis: SAA RESOLVED with Cytoxan without BMT

Date: 11/10/99

Age: 43

Remission: True

Story: I was diagnosed with severe Aplastic Anemia in 11/99. I had gone to the emergency room after fainting. I had an extremely heavy period, a terrible headache, a bleeding sinus infection, a gash from falling onto my glasses, painful mouth sores, bruises from where my cat jumped on my lap, red spots all over, and no energy. My doctor had diagnosed it as the flu. At the hospital, I laid there shivering for what seemed like a long time while they treated everybody else around me. They decided not to call anyone to let them know that I was there (it was 3:00 am, and my family was all out of state) until morning, since I didn’t look that sick to them (!). But when they started to insert a catheter into my arm, it more pain than I had room to take in. I felt an incredible pressure in my chest with no room left to breathe as I lost consciousness. That definitely got their attention! I was put on oxygen and monitors, and after the blood counts were in, transfusions of blood and platelets, and sent to the Cardiac Care Unit. Initial Counts: Hgb: 4.7 WBC: 900 GNC: 23 (not 2300) Plt: 8.4 My local hospital did a Bone Marrow Biopsy to determine if it was Aplastic Anemia. Within minutes of receiving the results, arrangements were made to transfer me to Johns Hopkins Hospital, 100 miles away. When I was wheeled into my room at JHH, I was immediately struck by the positive atmosphere of the Bone Marrow Unit there. Every staff member who entered my room had a level of professionalism, precision and confidence that was amazing. I personally never had to deal with my insurer; the hospital had an insurance wizard whose job was to get everything covered. I never even heard my HMO whimper. Before I had my slippers off, they were contacting my siblings to have them go that evening to their local hospitals for bone marrow matching. One of my sisters was a perfect match. My oncologists explained Aplastic Anemia, and my treatment options. They presented three treatment options to me. A bone marrow transplant was one option, but even with a related donor match, at age 41, my odds of survival were quoted at around 60%. Immunosuppressent treatment (ATG) was another option. This was described as having the probability of an initial remission, but a high probability of relapse after an average of 10 years. A third option that they presented was High Dose Cytoxan (the same chemotherapy that they use before a bone marrow transplant), without the Bone Marrow Transplant. High-Dose Cytoxan without a bone marrow transplant is an experimental treatment that is being tried at Johns Hopkins. I considered the options. I did not want to spend a lifetime tackling the graft-vs.-host problems associated with a Bone Marrow Transplant if I didn’t have to. I also did not want to have the possiblity of a relapse 10 years down the line. The high dose Cytoxan without the bone marrow transplant(autogenic, let my own grow back)did not appear to cause either of these. The disadvantages of the Cytoxan were the long, slow, vulnerable recovery period with low white counts, and the small but real chance of a fatal reaction to the chemotherapy. I chose the cytoxan. Tests began. Another bone marrow biopsy was done, along with other tests to verify that it was not another form of anemia or MDS. Tests were also done to determine if my sinus infection was caused by a fungal condition, and to determine if I had any other infections. Lung and heart function were also measured. They inserted a Hickman catheter for the administration of the chemo and later transfusions. This was done with “twilighting” sedation. I don’t remember anything of the procedure. There was a bit of pain at the site for a few days, but then the Hickman was problem free for the next 9 months that it graced my wardrobe. The cytoxan was administered only after they ruled out all infections and had eliminated my sinus condition. I had it for four mornings, along with another medication to protect my bladder from damage. On the 2nd day, food smelled ugly, and by the third day the idea of food was hideous, but this was expected. A few weeks of actually wearing size 4 jeans for the first (and only!) time of my life, but a new infatuation with the gentlemen Ben & Jerry helped me to get back into my regular clothes before very long. My hair left via my hair brush on about the 10th day, but this wasn’t so terrible. I thought that it was a small price to pay for a chance of a normal life. I was able to get a wig through an Image Recovery Center. I wanted to look as much like my old self as possible for my son. My appetite came back the minute I landed in the apartment, 10 days after the Cytoxan. I came back to the hospital daily for blood counts, transfusions, anti-fungal and antibiotics, and growth factor (Neupogen). While my white count was low, I wore the surgical mask whenever I left the apartment, and later on, my home. I avoided touching anything that I could avoid outside the house, stayed away from people, stayed out of restaurants, public restrooms, and any situation that put me close to crowds. I home-taught my teen-aged son for a little while to avoid school colds. The Cytoxan’s job, as I understand it, is to kill off the white blood cells, as they are malfunctioning, and let new ones grow from the stem cells, which Cytoxan does not damage. Kind of a chemical “rebooting” of the blood. My first post-Cytoxan white cells appeared 10 days after treatment. I had 6. I ordered them all little party hats, and got to know them personally. 🙂 A month after treatment, I had 160 of those little rascals and 11 neutrophils. At one month, 10 days, I had 600 white cells and 420 neutraphils, and they let me go back home, reporting to my local hematologist twice weekly, and still on antibiotics and other bug killers. I took care of my pal, Hickman, with daily Heparin flushes, and twice weekly dressing changes. Dressings were changed with gloves, mask, and betadine swabs. When it was time for us to part company, he was simply tugged out during outpatient surgery. I gave myself neupogen shots (not so bad, even for my squeamish self). In another month, when my WBC was 3000 and my GNC was 1000, they discontinued the Neupogen. My white counts immediately declined to the 1500 range, but this was expected. They then resumed their slow but steady upward climb. My last platelet transfusion was 2 months after the Cytoxan. Their initial growth was slow but they have sustained steady growth pattern. My last red cell transfusion was 10 months after treatment. I was never prescribed Procrit. FEBRUARY 10, 2003: In the words of my hemo: “APLASTIC ANEMIA IS “RESOLVED”!! Hgb: 13.5 WBC: 3500 Plt: 133 GNC: 2300 My counts have risen slowly but steadily since treatment. I have had no long term physical effects except menopause (age 42). I have my life back! And it is GOOD. I appreciate it so much more now, and am living it more carefully. AUGUST 8, 2003 UPDATE: Some counts still rising. Hgb: 13.3 WBC: 3800 Plt: 165k GNC: 2100 Hct: 38.6


ID: 316

Member: Marissa’s MOM

Email: Gardeniakb@AOL.com

Diagnosis: Aplastic Anemia

Date: May,2000

Age: 10

Remission: True

Story: Just dont know.


ID: 317

Member: Rachel Batson

Email: Rachbtsn@aol.com

Diagnosis: Aplastic Anemia

Date: April 1994

Age: 32

Remission: False

Story: After learning I had this “problem” I underwent a treatment that has to get individual approval by the FDA. It was basically serum derived from the blood and bone of horses. I was given massice amounts of them serum through constant IV’s for eight days. After the treatment my blood counts improved. A year later I became pregnant and the anemia returned in full force. As a result of the prednisone given with the treatment I have AVascular Narcrosis. I have already had my left hip replaced and am in constant pain with my right hip which needs to be replaced also. If anyone is considering this experimental treatment please discuss all the sideeffects of the drugs with your doctor in great detail. I was not informed of any side effects until it was too late.


ID: 318

Member: Kathy Miller

Email: mill148@attglobal.net

Diagnosis: Aplastic Anemia passed away May 30, 2002

Date: July 2000

Age: 48

Remission: True

Story: History of hypogammaglobulinemia since my 20’s. Had problems with bleeding when I had surgery to remove adnoids/tonsils when I was 10 years old. Lots of problems with ear infections, respiratory infections and digestive track problems which can be associated with low IgA and IgG in retrospect. HPV when I was 35 and CA cervix. No chemo or radiation done, just radical hysterectomy. Enlarged thymus – removed 1991. First petechia noted in 1993 – suspect drug Zoloft. Second petechia summer of 1999 – suspect drug Lamisil. Third petechia – March 2000 and hospitalized when blood counts were found to be all below normal – suspect trigger again of medications – Neupogen and Macrobid. Diagnosis of mild AA in July 2000 – one course of Neoral (cyclosporine) and counts rose to almost bottom of normal ranges. Taper completed April 2001 and remission for 2 months – blood draw on July 9, 2001 showed all counts falling again and resumed 200Mg Neoral with Magnesium. Having evaluation at NIH on August 7, 2001. This is now Kathy’s daughter Tanya writing. Unfortunately my mother passed away on May 30th, 2002 as a result of multiple organ failures following a bone marrow transplant. Her doctors suspected that the complications began to arise as a result of the chemotherapy treatment administered. I cannot elaborate much on this at this time except to say that she failed to exhibit any increase in white blood cell count after the procedure.I am not very familiar with the terminology associated with the disease, however if anyone who reads this wishes to recieve any further information or details I will consult with the records that were provided for us and with my father who knows more about the technicalities than I. My father and I miss her very much and hope that in the future no one will have to suffer the pain that such diseases cause patients and their families. My address is Tanya_N_Miller@msn.com


ID: 319

Member: claire

Email: clairemr3@hotmail.com

Diagnosis: Aplastic Anemia

Date: 5/29/2000

Age: 45

Remission: False

Story:  I can not tell you what it means to me to have found your web sight! I am 45yrs, and have been diagnosed with AA, now for one year. I am being treated at John Hopkins Bay view, Med Center, and I am the only one there at this time with AA. It is comforting to know there are people who understand out there. Again thank you for the information your provided and just for listening. Crt was 21 today.. transfusion in the morning! AAHH! Sincerely; Claire in Maryland


ID: 321

Member: Tamra Powers

Email: Tamra.Powers@commercebank.com

Diagnosis: Aplastic Anemia

Date: 7-14-2000

Age: 20

Remission: True

Story: I am 20 yrs old now, but I was diagnosed with severe AA last July. For several months I had been extremely tired, (I couldn’t even go up the stairs to our apartment without running out of breath and feeling my heart beat through my head!!) I kept wondering what was wrong with me but quite honestly I just thought I was really, really out of shape! I can laugh at that now, but I really believe what I was doing was just trying any excuse possible and denying that something was really wrong with me. I kept complaining to my husband but I don’t believe he really understood how bad I felt. Anyway, towards the end of 6/2000 I started feeling extremly tired and a lot of bruises started showing up. On 7/9/2000 I got really sick and started throwing up, which continued throughout the rest of the week. At this time my husband made me go to the doctor to see what was wrong. I truthfully believed I was pregnant! On 7/14 I had a CBC done, along with several other tests, the nurse was immediately alerted at my resting heartbeat of 137 beats per minute, my heart literally felt as though it was going to leap out of my chest! After my doctor appointment I went straight home. My doctor personlly called me not even an hour later and told me that due to my test results I needed to come down and be admitted into the hospital immediately. I was admitted into the cancer ward with a Hemoglobin of 2.9, a white cell count of .7 and a platelet count of 6000. I had nurses come in my room just to see me because I was the only one they’d ever seen with such a low blood count that was still walking! Initially they thought I might have leukemia but after researching a bit the thought of aplastic anemia came up. My doctor referred me to a hematologist at Barnes-Jewish Hospital in St. Louis, MO. After recieving 5 blood transfusions along w/several platelets, I went up to St. Louis there they believed indeed that I did have Aplastic Anemia. I am an only child so a perfect match from a sibling was not an option. I went ahead and started the ATG/Prednizone/Cyclosporin treatments and seemed to respond well. After I came home from those treatments, though I had to stay a few exra days due to reactions, I felt a lot better than I had just 2 weeks earlier. I maintained my blood transfusions and platelet pheresis along with neupogen, and procrit shots almost every day. Due to a miracle from God, I have not needed a transfusion since mid September of 2000. I still am on high doses of Cyclosporin which seem to be doing a pretty good job on their own. My doctor has recently started to very slowly start reducing my doses, however, I have just experienced a substantial drop in my counts which might change his mind on wether to maintain the reduction of medication. He has mentioned harvesting my bone marrow cells and freezing them, in the event I go into a sudden relapse and need a transplant. This is something that I am still in the process of finding more information on. Currently by the grace of God, I am maintaining on most days, count of Platelets-156,000..Hemoglobin 12.0…and white cell of 4.4. Up until now it has been a roller coster of emotions, now I am finding out there are several out there with this disease and am not as alone as I thought I was. It scares me, because my husband and I are wanting to start having children within the next few years, and I just don’t know how this disease will affect that. Thank you for listening I have needed to get all of this out and talk to people who really do understand this disease. I look forward to hearing from you. Love, Tamra Powers


ID: 322

Member: John Vancs

Email: tvancs@peoplepc.com

Diagnosis: Aplastic Anemia

Date: mar 2000

Age: 7

Remission: False

Story:


ID: 323

Member: Marion Strachman

Email: marika918@aol.com

Diagnosis: Aplastic Anemia

Date: August, 2000

Age: 49

Remission: True

Story: I began to feel tired and started noticing black and blues on my legs and arms. I went for a blood test and was admitted to the hospital the next day. After a few short stays at a nearby hospital, I switched doctors and was diagnosed with Aplastic Anemia. Of course, my life was never going to be the same. I have two children, a girl 14 and a son 18. I was given horse serum and about 5 months later, my counts started to go up. All this time I was put on cyclosporin and I am still on a low dose. Up till then I had many, many transfusions of both red blood and platelets. When the levels sort of peaked, I began to experience a great deal of arthritis pain and was put on Prednesone for about a month. As a doting mom and also working out of the home, it was extremely difficult to spend so much time away from home. Being relatively healthy most of my life, this was a great shock, physically as well as mentally and still is. At this time my levels are up to a degree called remission, but I never go a day or a few hours without wondering what they will be when I have my next blood test. I still have aches and pains and still feel tired with not much effort. I have heard many theories about the cause of AA, so, I have decided to put together a list of things that I could think of in the year before I was diagnosed that I suspect could have caused it. Possibly others will do the same and maybe we can come to possibly something in common. Here goes, painted wooden shelves in closed space, spray painted furniture with 3M waterproof, got a flu shot, had pesticides put on my lawn, Had to MRI’s, used cell phone a lot, used electric blanket for the past 10 years. So those are all things done within a year of diagnosis. I feel that it might even be like a Moletov Coctail. In other words, a number of things in conjunction. May God bless all of you. Hopefully there will be a link to something and there will not be any new patients.


ID: 325

Member: Arthur Kunofsky

Email: akunofsky1@nyc.rr. com

Diagnosis: AA BMT Success Counts on the Rise 4/02

Date: 11/99

Age: 64

Remission: True

Story: I appreciated reading your story as my husband is almost in the exact same position except that he is older–64. He was diagnosed with AA in November 99 and went through his first round of ATG–rabbit–because he was allergic to horse. The first round was successful and his counts went up substantially and he was transfusion free for about a year. Then in March he was diagnosed with prostate cancer and under went radiation and seeds. His counts had started to go down and he needed platelets for this procedure. Finally, in May the doctors at Mt. Sinai repeated the ATG and cyclosporine. He is basically on the same drugs that you are and his doctors are talking transplant but fortunately his sister is a match and it looks as if they are leaning toward this. They are also considering a mini transplant. It is now December 2001 and we arenow on the road to a stem cell transplant but it has been a long Haul. Arthur’s sister is a match but has had both breast and lung cancer but the doctors still feel that she would be his best chance. He had a severe reaction to ATG the last time, now we’re planning to use campath and cytoxin. The doctors have postponed stem cell transplant which was scheduled for Jan 11, because I have not recieved any transfusions since mid november. If you have any info on these drugs I would appreciate hearing about it. Good luck Bruce!!! I have been following your progress with AA for a long time. I got sick just about the same time as you did. Our stories are almost duplicate. I was very fortunate to have a bone marrow match from my sister. There were many concerns about using her as a donor as she had two recent episodes of cancer. I finally decided that with my counts not recovering that I had no choice and the doctors agreed. I was just released from the hospital this past Tuesday after six weeks as the “bubble boy” in a room that was a total nightmare. I was very fortunate that the nurses and staff were more than competent and caring. I had two treatments of ATG previously. The first one resulted in a short remission which enabled me to attend my son’s wedding and see what life could be like for a short time. After the second round of ATG I had a severe allergic reaction. I still have nightmares from that reaction. My tongue swelled and my throat closed and I could not breathe. It has not been easy for the past two years. I have been basically confined to my apartment. Now for the good news!!! My treatment began on March 4th at Mt. Sinai Hospital in NYC. I endured total lymphoid irradiation, chemotherapy with cytoxin and believe it or not another round of ATG followed by the bone marrow transplant. It is now almost one month to the day of the transplant and on my first visit to the doctor’s office today my numbers seem to be rising. My hemoglobin is 10.2, my platelets are at 25,000 and my white count is 7.6. Hemocrit is 31,000.


ID: 326

Member: Connie

Email: prissy1922@aol.com

Diagnosis: Aplastic Anemia

Date: 11-’01

Age: 46

Remission: False

Story: Hello. I have severe Aplastic Anemia. I had ATG (horse serum) and went into remission only for about 1 month. I have had treatment again(rabbit serum), but we do not yet know if I am in remission. They say if this does not work, the next step is bone-marrow transplant. This sounds very freightening to me. Maybe I have read too much on it. Anyway, I currently write to a few people with AA and am interested in writing to more. Thank you. 1-5-2002 Update Since ALG treatment, I have now been with stable cbc’s for about 4 months now. We are very pleased about this. Platelets are still low, but managable.


ID: 327

Member: Vivianne Wright

Email: vivwright@webtv.net

Diagnosis: Aplastic Anemia

Date: 0498

Age: 39

Remission: True

Story:  Hi Everyone! I was diagnosed in April 98 with severe Aplastic Anemia with a hemoglobin of 3 and 14,000 platelets. I was 36 at the time of my diagnosis. No bone marrow match with my sisters, so they decided on 5 days of ATG, 6 months of liquid cyclosoporine along with 2 1/2 months of Epogen. I did lots of sleeping and relaxing with my 3 months off of work. Funny, just 2 months before I said I had enough sickleave to be off for 3 months. Wow, be careful what you wish for! Before my diagnosis I had a hard time breathing, walking, concentrating, bruises and petechiae. I had a hard time staying awake at work and would go home for 2 hours to sleep! I can now say that I have normal cbc’s. My platelets are 185,000 and hemoglobin 14.8! :0) I really believe a positive attitude and support from AA pals and family make a difference! Now I go in for checkups every 6 months. When I ws first diagnosed I went in for 3 times a week for my cbc’s. I was also given 2 platelet transfusions and 6 pints of blood during my recovery.Wishing all of you the best of health! 5/16/03~ Cbc’s hemoglobin 14.6 platelets 221,000 Feeling well these days! I still like my naps though! I go every 6 months for my cbc’s and check-ups.


ID: 328

Member: James R. Slack

Email: JJRSLACKER@AOL.COM

Diagnosis: Aplastic Anemia

Date: February 19,2000

Age: 58

Remission: False

Story: Today I had the opportunity to read all of our mutual stories, each of which express optimism, faith, and a sincere sense of sharing. With that opening, I wish to share my story. Forgive me if my story sounds similar to yours; but perhaps my experiences may help. dx SAA 02/00 age 57 but going on 45. I had just returned from a snow mobiling sojourn in northern Wisc. and was in the process of shoveling 20+ inches of snow from our Illinois residence over the Presidents’ Day weekend 02/00. Felt tired and fatigued; opted for a few glasses of wine and relax; slept 16 hours that evening; and was fascinated that my stool was black the following morning. I thought it was the oreo cookies. My mentor, teacher, nurse or otherwise my wife convinced me to seek medical attention . dx initially as acute leukemia; revised to SAA with results of BMB. What’s Aplastic Anemia? I saw a thumbs up gesture from the emergency room staff at learning the dx was not acute leukemia but AA. Must be okay-take a pill and go home-I wish. I started the protocol of ATG/Cyclosporine/prednisone. Apparently the initial infusion of ATG was to rapid for my system:chills, tremors, fever, suspected heart attack. I was one large hive. After recouping for 4 days, started the regime over a longer period of time with minimal side effects. Spent three weeks in the hospital mainly due to the intial reaction of ATG and watching for serum sickness. Counts began to rise and hold as of 5/00: wbc 3.0, anc 1.5, hgb 9.0, plates 30,000. Only 2 infusions since leaving hospital. Cyclosporine was reduced from 4 to 3 and zip in August. I was off all meds; feeling great, even though counts below normal. BMB showed regeneration-was I in for a future suprise!!! 9/00 went in for my monthly CBC’s draw. Doctor thought it was a lab error, but all my counts were stable with the exception of platelets. They had fallen to 9,000. Those nasty guys are my nemesis. A BMB retest confirmed relapse; and I started back on cyclosporine and all the other meds that go with it. Six months passed with minimal results. Wbc 1.5, anc .8, hgb (infused every 2 weeks), plates (infused every 7-10 days). BUMBER! Underwent a second ATG treatment 4/01. To date, my counts are gradually increasing to where I,m transfused aprox. every 4 weeks with paxol(rbc/hgb), and every two weeks with platelets. Started on procrit(epogen) 8/11/01. Cyclo levels have varied due to changes in body levels and renal function. Currently at 3 twice per day. Wbc and anc holding at 2.5 and 1.5 respectively. Recently underwent hip surgery (core decompression) due to femoral heads on both hips being destroyed with prolonged prednisone use. It reminds me of the famous line from the film “Animal House”- “Thank you sir, may I have another”. I look forward to being off cruthes within 2 weeks providing the surgery went well. Then we do the left hip! P.S. I may sound upbeat about life and the path that God has laid before me. But I do have those periods of depression. There is not a day/hour that goes by without thinking about my condition and thinking about the what ifs. Thank you for allowing me to share my story and perhaps my successes and achievements. God bless. update2/2202: January 22,2002 had my initial appt. with Dr. Neal Young at N.I.H. After 14 simultaneous blood draws and 6 vials of bone marrow I should be receiving a “comphrehensive report as to my condition and a confirm of a second opinion and future treatment protocol. Per discussions with Dr. Young, we will be abondoning procrit and trying a regimen of other drugs such as numega (for platelets), which I have been on for the past month (DAILY INJECTIONS), and perhaps GSF’s and hormone stimulants to attempt to stimulate blood production. Currently my WBC is holding at 2.5-3.5, with an ANC of 1.5-2.5; HGB 9.0, but requires 2units of packed cells approx every 2-4 weeks; and my nemisis-platelets requires transfusion every 2-5 weeks (veries from month to month). I have noticed that I will hover in the low teens for weeks on platelets. We are in the process of weening me off of cyclo.-down to 2 ml twice a day. YESTERDAY, I CELEBRATED MY SECOND ANNIVERSARY WITH AA. Starting Monday 2/25 I will be starting a daily infusion of desferal due to iron overload. Oh fun. And the previous hip surgery was a failure requiring hip(s) replacements. We are trying to get the platelets producing on my own before surgery, if possible. MY goal is get rid of the crutches. If future treatments do not show improvement, a 3rd. ATG (with rabbit rather than the 2 previous with horse) will be tried. I’m still upbeat,and pray for all our continued sucesses. My new e-mail address is JJRSLACKER@AOL.COM


ID: 329

Member: Jenna White

Email: laurie White [laurieandjim@hotpop.com]

Diagnosis: Aplastic Anemia

Date: June 12, 2000

Age: 10

Remission: True

Story:  July ’05 Update -3 Years No Meds in Full Remission – Hi there, my name is Jenna and I was dx’d with SAA on June 12th last year. It all went real fast. At first they thought I had ITP a platelet disorder. Then they decided it was AA. Well I went into Primary Children’s Hospital on the 5th of July. I had only had 7 bags of platelets by this time. On the 6th was the day of my surgery for my central line. The 7th we started my ATG. I had only a tiny bit of hives and went home on the 12th.I had two bags of platelets in the hospital. After I got home I had only a bag of platelets a week and since August 12th of 2000 I have not needed any more. I am still on those “SKUNK” pills. Boy do they stink! Magneseium and some sulfa thing to keep me from getting inside ifections. I am getting off of my pills. I started with 12 of those smelly things and I hope at tomorrows labs I get to get off of another one. I only have to go have my labs once every other week now instaed of every week and I only have to go to Primary Childrens every other month. WEEHAW! We do not know if this is going to work forsure. I might still need a transplant. If that is what I need to do then I guess I will because I just want to be fixed. I have Juvenile Diabetes also. I have had it since I was 1years old. They say I have a bad immune system because it is an immune system disease also. I just want to get past this! So I just keep taking my pills. If there are kids out there my age who want to talk, email me and I will write you back. I think it would be good to have someone who knew what I was going through. Thanks, Jenna 7-22-02 I have not been here for sometime and thought I should update the group.Well, it is now two years since treatment. Jenna has her two year check up on the 26th. Recent counts reveal that she is holding her own. Platelets average between 120,000 and 140,000. Those counts have also only climbed dramatically since having been off of the cyclosporin in the end of May. All other counts are wbc’s averaging between 3100 and 5600 with almost always between the 40% and 50% abs neutrifil count. All other counts are in the low normal range. She attended school last year and though she missed about one whole grading period for a combination of reason including some headaches she started having, she managed to hold an A- average. Yes a doctor she plans on being! A hemotologist! Her plan is to tell those kids that she understands exactly what they are going through and that they can make it! Laurie- mom to Jenna November 13,2002 Jenna is still doing well. All counts are with in normal ranges with those platelets averaging 130,000. She has been off of her meds since May. She has been enjoying being a healthy kid once again! Another birthday has come and gone and life seems so very different from two short/long years ago. I hope and pray this continues! I hope those of you who read this are given some hope and are encouraged! Laurie Jenna’s mom April 30, 2003- It seems my visit’s are far and few between these days. I am pleased to say that with in a month Jenna will have made it through a whole year without any meds! A major accomplishment! She is down to hemoc visits 3 times a year and labs about once every two months. Her counts, every one of them are normal and platelets now averaging 170,000. She is living life to the fullest! For the last four months she has either had a rehersal or a show four nights a week as she was in the production Joseph and the Amazing Technicolor Dreamcoat. She loved doing it! Between Piano lessons and theatrical class and Joseph and his Dreamcoat I would say we are now living life as normal as life can be.Once again, my updates are if anything to share our experiences and to hopefully give hope to those of you who are battling one of these diseases. There is hope! Do not give up! Laurie mom to Jenna. 9/23-04 Hello again…Just a quick note…Jenna still doing very well. It was two years the end of May that she has been with out any meds. Counts are all within the normal ranges. Only goes to Primary once a year now and labs are done only twice a year. I thatnk God every day that treatment worked for her. She just turned thirteen on the 16th. She still plays the piano and has thus broaden herself by having played base ball this past summer and has taken on the sport of fencing. She is really enjoying it! Who knows, one day a future Oylpian maybe. Good luck to all of you! –Laurie–Jenna’s mom–


ID: 335

Member: Sebastian Roman

Email: groman@ara.cl

Diagnosis: Aplastic Anemia

Date: July 27, 1997

Age: 13

Remission: True

Story: I will be sending separately to you the story of my son Sebastian. Could you please send to the e-mail adress above written your respective adress. Guillermo Roman Santiago, Chile


ID: 336

Member: Stephen Glass

Email: pglass@erie.net

Diagnosis: Aplastic Anemia

Date: June 2000

Age: 2

Remission: False

Story: My son Stephen was diagnosed in June of 2000 with AA. He was born in 3/99. Prior to the diagnosis he developed abcesses on his thighs from his immunizations. These abcesses were drained after one was infected. (kinda odd that he had abcesses after all three injections) In Jan 00 he had some very bad bruising and was on Motrin and Bactrim at the time. The meds were stopped and his [platelets began to rise. Then in April his platelets dropped again and it was thought he had ITP. The rest of his counts crashed in May and he was then diagnosed with AA. He was treated at Children’s in Pittsburgh with the ATG therapy and has had a slow response. He has been tx free since 4/01 His WBC and Hgb are at the low end of normal and his plts are around 20. His counts actually seemed to get better once the Cyclo was stopped. Right now he is on NuMega and GM-CSF. Stephen is our only child and is not a BMT canidate at this time


ID: 337

Member: Andrew McBride

Email: cmmcbride@home.com

Diagnosis: Aplastic Anemia

Date: 7/98

Age: 7

Remission: True

Story: Andrew’s legs were very bruised when we returned from vacation (he was 4) which prompted a doctor visit. He was initially diagnosed with ITP. The day after that diagnosis Andrew got very ill and we were told to take him to the hospital. His diagnosis then changed to probable Leukemia which after BMB was changed back to ITP. Several days later and many tests later his diagnosis was ruled Severe Aplastic Anemia. His brand new baby sister (2 mos. at the time) was a perfect match for his bone marrow but was too young to undergo the procedure. So Andrew received the ATG, Cyclosporine, Prednisone, GCSF regimin. He went through the ATG great – no side effects at all. However, he had an abscess on his abdomen and a small hole in his bowel which kept him in and out of the hospital for about 2 mos. He has been off Cyclosporine for almost 2 years now and is in full remission. We thank God for every day that we have.


ID: 339

Member: Terriel E. Wessinger, Jr.

Email:

Diagnosis: Passed away August 1, 2003

Date: June 3, 2001

Age: 70

Remission: False

Story: Daddy passed away on August 1, 2003, just two short years after his diagnosis of aplastic anemia. He was a strong man and the best father in the world. He is survived by his wife, five children, and eleven grandchildren. We will miss him terribly. We love you, Daddy.


ID: 341

Member: Ilir Kullolli

Email: ikullolli@hotmail.com

Diagnosis: Aplastic Anemia

Date: 11/17/1999

Age: 23

Remission: True

Story: http://www.geocities.com/ilir_status


ID: 342

Member: Crystal Downen

Email: crystal_d69@hotmail.com

Diagnosis: Aplastic Anemia

Date:

Age: 20

Remission: False

Story: I don’t have AA but my aunt lost here battle with it on Monday November 5, 2001 and I am trying to do my best to research and help others so they don’t have to go through what she went through.


ID: 343

Member: Nita

Email: mona_28_2000@yahoo.com

Diagnosis: Aplastic Anemia

Date: October 2001

Age: 42

Remission: False

Story: Welll my name is Mona and I’m writing for a very dear friend of mine as she was in the hospital for 9 of the longest weeks I’ve ever known. She passed on November 5, 2001 of what the doctors called complications of the Aplastic Anemia. Which took them 6 weeks to even tell us that she had it. When she went into the hospital her counts were so low that they said wow how is she walking and talking. But nita well she said that she felt fine. Just two weeks prior we climed hills and walked about a mile and burnt hamburgers together and took pictures she was as healthy as they come short of some really bad bruising that her body had gotten. She had promised that she would go to the doctor as soon as her insurance kicked in and that was two weeks from that day well she didn’t make it that long and she got sick. I am not sure about this blood disorder and even less informed than I should be I guess. But what scares me most is that she went to one Arkansas best hospitals and they couldn’t even tell us what was wrong. I’m going to end this story here and sorry it was so long but I just have so many questions and wondering what could have been done different. Guess that’s ever family that has these questions when someone passes so quickly. 9 weeks just wasn’t long enough… Mona 🙂


ID: 345

Member: Ali Holder

Email: ksholder@fuse.net

Diagnosis: AA/MDS 10/99 LGL 4/01 LD Cytoxan Responder

Date:

Age:

Remission: False

Story: I came across your site link on the AA/MDS ListServe and through regular emails with Marla Brown. I was not familiar with the method that you have chosen as an alternative approach, so enjoyed learning something new. First, let me say that I do not have AA or MDS. I have another wonderful little number classified as Large Granular Lymphocytic Leukemia, fondly referred to as “LGL.” I am a physical therapist who works full time, 44, female, married without children, living in Cincinnati, Ohio. I began my journey, however, with an emergency hospital stay for what they thought was AML. I had been followed since ’92 for low WBCs. I was not too consistent in following with my hem/onc as I was feeling quite well. After a 3-month period of time during which I felt I was overworked and fatigued, on 10/15/99 my husband dragged me to the doc with a 3.4 hgb and I was hospitalized. After receiving 6 units of PRBCs, I went home late the next day only after I promised to return in another day to begin that familiar routine of CBC/Ds and transfusions. My first 2nd opinion told me that I might have AA (that’s how we found the AA/MDS ListServe) and strongly recommended treatment with ATG/CSA but suggested that I consult with one of his partners first. His partner felt that it was MDS and I began being HLA typed along with my siblings. We found a great match and I actually was very positive about the pending BMT. But we took a detour via MD Anderson 12/99 to talk with someone with more experience with either of these diseases (mine of course did not have a normal or definite presentation). There I was told it was not AA or MDS but that I could maybe tease out what it was by trying ATG. We had no sooner returned from Texas before MD Anderson called. It appeared that one of their pathologists who saw my BMB/A reviewed at their weekly roundtables wanted some more blood and was wanting to investigate the possibility of LGL leukemia. We immediately sent blood and located a guru on LGL at Moffitt Center who agreed to see me. In the meantime, we sent blood out to a lab in Washington state that Moffitt used for confirmation of the LGL. It was confirmed at a visit at Moffitt 4/00. I was informed that ATG might have had very negative consequences for me had I pursued it. There are not many known cases of LGL (1 in 10 million worldwide) out there but it is a clonal abnormality involving a gene rearrangement on the T-cell that is confirmed via flow cytometry and a specific gene rearrangement study. It is usually heralded by neutropenia and often accompanied by RA. I, of course had the additional complication of anemia. I went on an 11 month protocol using low dose oral cytoxan daily @ 100 mg. It worked after about 2 months. My WBCs dropped even lower on this chemo drug. The last several months my counts began a slow downward trend. I began emailing with Marla on alternative approaches. If what I was doing didn’t work, I was told I would just do it again. Not a pleasant thought. I began to be concerned about my liver, kidneys, etc since my docs weren’t the least bit concerned about possible side effects down the road. My last transfusion was 5/26/00, I completed the cytoxan 4/13/01. Starting in 3/01, my husband and I became vegetarians. Most recently I am following a similar approach as Marla, using BarleyGreen concentrated green food source and fresh carrot juice daily. We eat very little cooked food trying to boost the nutrients at the cellular level with a rawfood diet. Marla’s courage to try this natural approach was contagious. My husband has joined me in this endeavor. My platelets have not been affected throughout my ordeal. I believe that my illness was from environmental sources, what I ate, how I lived, vaccinations, household cleaners. Through the AA/MDS ListServe, I encountered 2-3 others with a similar condition to mine. Very few people, however, are choosing an alternative path. Marla suggested I contact you. I am interested in following your experiences. I have been feeling great since changing my diet and my counts appear to like it. I kick myself for not trying this before the chemo, but at the time my concern was to avoid transfusions which might affect my odds if I needed a BMT. My WBCs have moved from 1.2 to 2.2. This was the level of my WBCs in ’92. I am now hoping to change this despite my docs thinking otherwise (in their words, be happy with what you got). When I saw my hem at Moffitt 4/01 he told me that he had been hoping for transfusion independence as the best outcome, that molecular remission was not the usual occurrence. However, my latest tests seem to indicate molecular remission. I am crediting a lifestyle change for this occurrence. Everything that I found out about the immune system from medical sources seemed to indicate that when you had a disease of the immune system, you couldn’t just strengthen the immune system as it might have dire consequences. But I felt that what I needed to do was strengthen my immune system, and Marla was the only one I knew who also sensed this. Just wanted to let you know that there are many of us out there with positive alternative experiences. The choices I make have been largely affected by the folks at Hallelujah Acres (www.hacres.com), Dr. Day’s testimony (www.drday.com), Marla and the Gerson Clinic. Diet and lifestyle changes are the primary recommendations. We have been cleaning up our home and steam distill all our drinking water. Will keep you in thoughts and prayers on your journey, Sincerely, Ali Holder


ID: 346

Member: Bridget

Email:

Diagnosis: Aplastic Anemia

Date:

Age:

Remission: False

Story: My story, well I’ll give you the short version. I was dx with SAA in the fall of 89. I was 17 years old. One day I went from school to the ER with heart palpitations. I was always tired and always wanted to sleep. I had a lot of bruises as well. Believe it or not the ER doctors never did a CBC so my counts being low was not caught until I went to a f/u visit to my PCP. They just did it as routine and I went back to work and school. They got results later that day and I was admitted to the Hospital. When I look back I remember how extremely tired I was the summer before school. I was on iron supplements that summer because I was anemic on my doctor’s visit before summer vacation. I could go on and on, it’s a long story( including being scared to death of a transfusion ..they came in the middle of the night to hook me up…I about fainted). Anyway, I was treated at the NIH with ATG /cyclo/pred in 2/91….it worked right away for me. I would relapsed again whenever I caught the flu …cyclosporine by itself would usually bring my counts up to low normal. I was married in October of 94 and we decided to try for a baby. My counts were pretty stable. I found out I was pregnant in 95 and my counts started a downhill slide. My platelets dropped as low as 3, but I wasn’t given platelets because they needed them for when I would deliver. My Hgb dropped to around 7.5 before I was transfused. I still worked full time as a nurse /being transfused every few weeks until my daughter arrived 8 weeks early in 6/96.Then I found out I had SVT (long story there too, in other words, my heart likes to beat very fast sometimes) After I delivered I was put on cyclosporine but it didn’t seem to help. So, in 2/97 I was given ATG /cyclo/pred again. I responded slowly this time. They told me then and there that they had no knowledge of this ATG working a third time. Well, I got quite a surprise in 97 I was pregnant again. We definitely were not expecting this. The doctors all told me to abort him…….but I would not (long story .letters from my doctors, encouraging me abort him). At this time my counts were stable and I decided to cont. with the pregnancy. They wanted me to start cyclo right away. I made a bargain with them and started cyclo at the end of my 3rd month. ( long story there as well..not much info. on AA and pregnancy) Amazingly, my counts stayed in the low normal range with him. I never had to be transfused. Although, I started having contractions around 20 weeks, they thought it was due to the cyclosporine. He was perfectly healthy and was born at 37 weeks 6/98. I even went off cyclo…after his birth so I could feed him. I basically was fine until around August of 2000. I needed to have surgery and during a routine CBC they found out my platelets were dropping, every week I would have another test and my platelets would still drop..until finally my HGB and WBC began dropping as well. They thought it was my AA again and did a BMB. Turns out that I have now progressed to MDS RARS I think its called RMCD or something like that now because all 3 of my cell lines are affected. My WBC stays around 2.4, ANC 800, Platelets 20-30, HGB has been as low as 4.0 but I usually get transfused at 7.5 or 8.0. I also have a deletion on chromosome 13. I have no matching relatives for a BMT and I’m afraid I won’t do the unrelated match even if they found one. They 30% success rate scares me silly. I might live longer without a BMT than if I had one. Oh, by the way I’m adopted and we did test my sister, she wasn’t a match. Not everyone is aware that I have this disease. They don’t understand and it’s hard to make them understand without going into a long story. People like to hang on the word anemia and don’t understand how it is a life threatening disease. They say things like,”take some iron” to which I reply, “I have iron overload, iron is the last thing I need.” Then they say, “you don’t look sick” therefore I’m not sick! To which I reply,” thank you, I do feel good today, I had 3 units of blood yesterday”. OOPS, I mentioned the word “BLOOD transfusion”. They don’t understand I can feel well one day and do most normal things and then feel so bad another day that I can’t move off the sofa or play with my children because I’m so tired. The fatigue is so unexplainable unless you have had this disease. I get fustrated just trying to do the normal things. In February of 2001 I tried cyclosporine at 300mgs BID, I couldn’t tolerate it this time at all. I weigh 108, so they decreased the dose and added MMF at 1000mgs BID. I tried this until May. NIH decided it wasn’t working and I decided to stop. I refused the Androgen/male hormone. I tried B6 200mgs BID. I was told about Epogen but my erythropoetin level is very high and my Dr. said it was unlikely to work. I decided to get a port -a-cath in the fall for desferal since I’m in iron overload/ and so I don’t have to be stuck 6 times to find a vein for transfusions.. Also, the theory is; if my iron comes down maybe my counts will go up. I have had Iron overload for over 10 years. Then I will try ATG again. I had the horse serum first 2 times and now they will use the rabbit serum. I’m a little anxious since I had to be desensitized to the horse serum. I’m afraid of a really bad/fatal reaction this time. In the meantime, I have been off all meds this summer for a little breather and to have time to enjoy my favorite time of the year. I hear all these stories and I see a lot of people are upbeat and optimistic. I would love to be that way. I’ve learned to take one day at a time and try to live it to the fullest. I look at my children every night and I thank God for them. They are truly miracles. I hope in the future that I can survive this disease to be there for my children and maybe even have another one. I’ve had this disease 11 years now. On one hand I say hey, I made it 11 years! On the other hand, Why have I had to live with this fear for 11 years? Day to Day I think about this I think about that I wonder about the what if’s I wonder about the what not’s I forget on a good day I remember the next day. Bridget from Maryland 29 yrs DX AA in 89 TX ATG/cyclo/pred in 90 Partial relapse/ TX with cyclo Total Relapse in 95/96 TX ATG/cyclo/pred in 97 AA to MDS RARS in 00/01 2 successful pregnancies, wife to James, mother to Sierra Rose age 5 and Noah James age 3


ID: 347

Member: Cindy

Email:

Diagnosis: Aplastic Anemia

Date:

Age:

Remission: False

Story: My world was turned upside down in the Fall of 1987. I went from working full-time at St. Paul’s Hospital, to being a patient there in the course of one day. I had gone to work that day a little frustrated because I’d had a difficult time eating my breakfast that morning. I had what I thought were cold sores on my tongue, which made it very difficult to chew my food. I also had noticed what I thought was a rash on my lower legs. I was quite tired and had developed some large bruises on my body that I couldn’t account for. Soon after I got to work, I went to visit the Employee Health Nurse. She looked at the sores on my tongue, “rash” on my legs and bruises, and told me that I had something systemic and something topical. She said that I should go to see my family doctor as soon as my doctor’s office opened, and ask to be seen as soon as she could. My family doctor’s office was just across the street from St. Paul’s Hospital, so I walked over there, told the receptionist that I had been sent by the Employee Health Nurse, and had a seat in the waiting room. I only had to wait about half an hour before my doctor was able to see me. She took one look at the sores on my tongue, “rash” on my legs and bruises, asked me some questions, and ordered a blood test for me. She said that I could go back to work after the blood test, and she would call me once she had the results. I worked for about an hour or two until she called me. She said that all my blood counts were low, that I should stop working, and wait for a call from a haematologist. Not too much later the haematologist called me, and said that she wanted me to go to the emergency department, because she wanted to admit me to hospital. So I thought I had better call my parents to let them know what was happening. My Dad answered the phone, and in telling him what was happening, I started to cry. I didn’t really understand why I was being admitted to hospital, and the shock of it all hit me as I was explaining it to my Dad. After the phone call, I headed to the emergency department, where I sat waiting for what would happen next, whatever that might be. Eventually a nurse came and had me exchange my clothes for a hospital gown, then had me lay down on a stretcher. I waited there until an intern came and took my medical history. Later on the haematologist came to talk to me. It didn’t take too long until I was transferred to a medical ward. There I received two units of red blood cells. The haematologist came to visit me on the ward, and said that I would be having a bone marrow biopsy the next day. She also explained that the “cold sores” on my tongue were actually hematomas or blood blisters, and the “rash” on my legs was something called petechiae, which occurs when small superficial capillaries burst. That next day I had the bone marrow biopsy, and later on that day the haematologist came to tell me that I had been diagnosed with a very rare blood disorder called Aplastic Anemia. The cause of this blood disorder is often unknown, as it was in my case. Aplastic Anemia occurs when your bone marrow stops producing all three blood cell types. These include your red blood cells, white blood cells and platelets. When your red cells are low, so it your energy level; when your white cells are low, you are more prone to infections; and when your platelets are low, you bruise easily and may have spontaneous bleeding. The haematologist said that they would see if my sister, who is my only sibling, would be compatible as a bone marrow donor. They would do a bone marrow transplant if she was compatible. It turned out that she wasn’t a compatible bone marrow donor, and at that time there wasn’t an Unrelated Bone Marrow Registry, so a bone marrow transplant wasn’t an option any longer. They next tried various drug therapies to stimulate my bone marrow into working again. After my first two nights in the hospital in a 4-bed room, I was transferred to a private room with reverse isolation precautions. Everyone had to wash their hands before they entered my room, and the room had a special filter that kept out all micro-organisms, so that I wouldn’t develop any infections due to my low white cells. During my two month stay in hospital, I received two different intravenous drug therapies. Neither or these worked, and each had very unpleasant side effects. Throughout my stay in hospital, and for another seven months afterwards, I required both red cell and platelet transfusions to sustain my life. I received these transfusions weekly and sometimes twice a week. After my discharge from the hospital, I was started on an experimental oral medication. I spent two months convalescing at my parents’ home, and then returned to work on a part-time basis. I resumed working full-time after another two months, and have continued to do so. The oral medication eventually started my bone marrow working again. I am currently working as a Pharmacy Technician at Lions Gate Hospital. One of the primary reasons that I joined the Speakers’ Bureau, was to have the opportunity to thank people like yourselves who donate blood. I will never know the blood donors who donated blood for me, but want to tell the blood donors that I do meet, how much their selfless contribution of themselves means to me. I wouldn’t be here today, if it weren’t for the people who took the time to donate blood. I am sincerely grateful to those who gave of themselves, so that I could live.


ID: 348

Member: Mechelle

Email:

Diagnosis: Aplastic Anemia

Date:

Age:

Remission: False

Story: Mechelle DX SAA 9/98 Transfusion INdependent Cycle Leading a Normal Active Life in Remission! My name is Mechelle, I am 34 years old and have to little boys . I was diagnosed with Severe Aplastic Anemia in Sept./98. I was playing with my children out in the yard one morning and noticed alot of bruising and pettichie, I went to the Dr. and had some blood tests done. That evening I found myself in the Leukemia & BMT ward in isolation, I remained there for 21 days. I had my first round of ATG/Cyclo/Pred in Sept./98 (my brother was not a match for a BMT), I was then transfusion dependent receiving platelets every 7 days for 10 months and Hgb every 21 days for 14 months. After a year of transfusions and no response it was decided to repeat the ATG/Cyclo/Pred, so exactly one year later I had ATG again. I was then transfusion dependent on Plat. & Hgb for approx. 2 months, then my counts stopped dropping and stabilized. I haven’t had a transfusion in almost 20 months, (there were times when I wondered if I would ever be able to say that!!). My counts are still low, but they are safe and stable. Slowly my counts continue to coming up, it is very hard “waiting”. I know it could take years for my counts to come to a “somewhere normal” range. As long as they are coming up, I am happy and relieved!! Before AA entered my life, I had never been sick a day, never been in the hospital except for the birth of my children!! In September it will be 3 years since my diagnosis. I am still on Cyclo., last year we tried a slowly taper, my counts remained stable throughout the 6 month taper. Just as I was finishing the taper, my counts started to drop. The Cyclo was restarted and my counts bobbed up and have been stable since. We are going to try the taper again in Sept. I lead a very normal life, I have no problem keeping up with my active little boys. Most people are very surprised when they learn of my serious illness. They usually say, “But you look so healthy”. I feel good, my energy level is pretty good. Im very thankful for my life, that Im here and beating AA. AA has taught me many important lessons in life. It forced me to look at life in a much different way, ultimateley these lessons have had a huge impact on the person I’ve become. Sometimes negative things can have positive outcomes. Don’t believe everything you read about AA, many, many people live with this disease, or better yet, beat it. It can be done!


ID: 349

Member: Hobbs Family

Email: JoanPHobbs@aol.com

Diagnosis: Aplastic Anemia and Bone Marrow Transplant

Date:

Age:

Remission: False

Story: http://hometown.aol.com/kelseystatus/myhomepage/profile.html http://www.caringbridge.com/ri/kelsey/


ID: 350

Member: Shari

Email:

Diagnosis: Aplastic Anemia

Date:

Age:

Remission: False

Story: http://www.geocities.com/HotSprings/Villa/4803/


ID: 351

Member: Kristine

Email:

Diagnosis: Aplastic Anemia

Date:

Age:

Remission: False

Story: http://www.vlib.com/christine/diary.html


ID: 352

Member: Louise

Email:

Diagnosis: Aplastic Anemia

Date:

Age:

Remission: False

Story: http://aafa-ner.org/aa-mds/vince&.htm


ID: 353

Member: Craig Kinneson

Email: Craig.Kinnison@kellogg.com

Diagnosis:

Date:

Age:

Remission: True

Story: Let me begin this message with my warmest thanks to each of you who has lifted me up during the past 9 months. It fills me with great joy to know that I have found friendship and love from so many great people in so many areas of our world. Today, I learned that my bone marrow is nearly normal once again. (By “nearly” normal I mean normal with the exception of slightly reduced Megakaryocytes – that which creates platelets). I’m told that I can live normally again without restrictions. Although my blood counts remain below normal values, I am confident that they will return to normal within a few months. I have been transfusion free for 45 days and have seen steady improvement in my counts (especially platelets – now 60) since returning home from Seattle. Therefore, I believe that I have been cured of my aplastic anemia. Our prayers for healing return to prayers of thanksgiving. Please feel free to call us to celebrate, to ask questions, or just to keep in touch. Craig w. 615-599-2688 h. 615-595-4280 “Therefore, if anyone is in Christ he is a new creation; the old has gone and the new has arrived!” 2 Corinthians 5:17


ID: 354

Member: Candace Green

Email: DaCaGreens@cs.com

Diagnosis:

Date:

Age:

Remission: False

Story: It was great to hear from you. My husband was diagnosed with Aplastic Anemia in the fall of 1995. We have been through it all. You are right about there not being many places to share experiences. I would like very much to be part of a discussion forum. Thanks for contacting me. Candace Green


ID: 355

Member: Hazel Campos

Email: its_da_haze@hotmail.com

Diagnosis:

Date:

Age: 26

Remission: False

Story: Wow! I just found your website and I am impressed with what you have presented to the world! My name is Hazel and I am a survivor of aplastic anemia. I’m now 26 and have been in remission for about 10 years. Aplastic anemia certainly impacted my life as well as my family’s. I commend you for turning this negative event in your life to something positive to support others out there who have gone and/or are gong through what you and your family are facing. Your site has inspired me to share my own story – I’ve always wanted to return my good fortune in some way, just never knew how… I think I do now. As soon as I get it together, then I’ll post it to your page. Hang in there! Keep strong in your mind and in your spirit! You and your family will be in my prayers. Please feel free to contact me, write to me, let me know how things are – even if you do update your journal. I’m an e-mail junky and am available if you ever just want to vent – I can certainly identify with your position. Take care and I hope to read more on your progress. Sincerely, Hazel Campos


ID: 356

Member: Karen Brother

Email: Karenaitchison@aol.com

Diagnosis:

Date:

Age:

Remission: False

Story: I just finished reading your journey with AA, my brother has just recently been dx and has started tx. @ MD Anderson in houston. Like you, he has had a vey unpleasant response to treatment and we all have experienced the heart wrenching roller coaster ride of diagnosis, treatment, alternatives, prognosis. He just turned 45 and is a candiate for BMT, we (his siblings) haven’t heard if we are a match. We just pray for remmision for all patients who suffer from this horrible disease. thank you for your Web site, i will look forward to reading your entries. karenaitchison@aol.com My brother had worked as a mechanic for UPS and was in contact with cleaning solvents many years ago…am wondering if this could be a link.


ID: 357

Member: Annie & Nicholas

Email: NSPANKY1021@aol.com

Diagnosis:

Date:

Age: 2

Remission: False

Story: My name is Nena and I am Annie and Nicholus’ mom. My daughter was diagnosed with AA when she was 2 yrs old. She did well with prednisone therapy and the major worry was when she was old enough to begin her period. The doctors believed that if she had her period and lived through the bleeding then she would be in remission. Well, after living through her periods, the doctors said for us to forget that she ever had AA. She was in remission and it was as if she had never had it. Low and behold stuff happens. July 1999, my daughter was once again having bloody noses and feeling very tired all the time. She began having transfusions every day or two and in August she was transported to UMC in Tucson, AZ to have another bone marrow biopsy. We were then put in a room with several people and it was announced to us that these people where the BMT team. Annie had gone into severe AA. They decided to type all of the family (no one matched) and prepare her for a BMT. They said that they would put her on cyclo. (Neoral) and see if that would keep her levels up high enough until they could hopefully find a BMT match for her. Well, that was 2 years ago and she has been doing well with the cyclo. therapy and has not had a BMT mentioned since. Recently her hemoglobin count has been steadily dropping, so they increased her cyclo. to see if that will maintain her counts. We can only hope and pray. My son, at the age of 15 yrs was told that he also had a blood problem. They could not confirm that it was or was not AA (I never understood this). When we moved last year to Reno, NV a blood doctor there said he had ITP. He has been doing very well with prednisone therapy and managed to get his platelets to 214k. However after the doctor took him off the prednisone his platelets began to steadily drop. This past Thursday he had to have a bone marrow biopsy. The doctor said his platelets were at 34k (nothing new for Nick) but the other factors were also either low or at the low side of normal. His WBC was at 2.1. They immediately put him back on prednisone. He had another blood test today and in 4 days his platelets have increased to 91k but his WBC is only at 2.3. When I asked the doctor what this ment he said that it does look like it may be AA and that he may be going into bone marrow failu! re. We should hear something this week regarding the bone marrow biopsy. I think that this affects me more than my 20 yr old daughter or my 19 yr old son both possibly with AA. Although I did overhear my son crying 2 nights ago. I just thought I would write to you because you seem so understanding. Even though I am only the mother and not the patients, it is very hard for me. After reading everyones story in this site, I keep reading about ATG. This is the first time I have ever heard of this. I am going to bring this up to my kids doctors and see if my kids are possible candidates for such a procedure. I hope that your daughter is doing well. I am sorry to go on and on, but I just felt like talking with someone that can relate to what I am feeling. To be honest with you, my ex-inlaws raised my two children. Therefore, I was not directly involved with my daughters treatments. Not that I wasn’t there for her and her illness, but it wasn’t the same as if she lived with me. My son lives with me now, so I know first hand what my inlaws went through. I talk often to them regarding both my daughter (who still lives with him) and my son, and every question and concern I have. Unfortunately they live in a small country town and don’t have all the resources that we do! in a larger city. However when I talked to my ex-mother inlaw tonight and mentioned ATG she had never heard of it either. OK, I am rambling now, so I will go. I truely thank people like you for supporting those of us in the same or simular situations. It has really helped me to read all of these stories. It has created more questions too. Thank you for your time. Sincerely, Nena (Annie and Nick’s Mom)


ID: 358

Member: Langston’s mommy, Peggy

Email: BoomerBooo@aol.com

Diagnosis:

Date: March 21, 2001

Age: 4

Remission: False

Story: My little boy, Langston, went in for his 3 year checkup last year and his platelet count came back low. We were sent to Childrens Medical in Dallas and was diagnosed with Aplastic Anemia. We did the immunosuppressive therapy with ATG with no results. He needs platelets every other week and red cells every 3 weeks. We give GCSF shots twice a week and cyclosporin/bactrim twice daily. I was pregnant during diagnosis and his brother is a perfect match. He is scheduled for BMT mid January. The transplant has been postponed due to a severe case of sinusitus….it has been 3 weeks and still not there yet. I have made a site for Langston http://hometown.aol.com/boomerbooo/langston.html


ID: 359

Member: DANIEL STRASBERG

Email: dstrasberg@cponline.org.ar

Diagnosis: AA-HOMEOPATHIC TREATMENT-CURED

Date: 03/30/2001

Age: 20

Remission: True

Story: MY SON GABRIEL STRASBERG HAS AA. HE IS DOING HOMEOPATHIC TREATMENT AND DIET FOOD.- TODAY HE IS GOING VERY WELL, HIS BLOOD COUNT GROWING UP AND HE IS BEGINING HIS REGULAR LIFE.- I WOULD LIKE EMAIL WITH SOMEBODY ABOUT APLASTIC ANEMIA AND HOMEOPATHIC TREATMENT.- MY EMAIL IS dstrasberg@cponline.org.ar ________________________________________________________ HE WAS DECLARED OUT OF SIKNESS ( 2004/03) AND DOING HIS NORMAL LIFE ( 2004/09). HIS PLATELETS ARE OUT OF RANGE STILL, BUT ALL IS OK SAID HIS HOMEOPATHICS MD.-


ID: 360

Member: yuedian yang

Email: yyd1122@ chinaren.com

Diagnosis:

Date: 1997.10.7

Age: 28

Remission: True

Story: I am Chinese.i can’t express myself freely in english,sorry.on that day in 1997,i judt find some blood point on my back.i went to hospital and had blood test.the doctor said my white blood cells and plateletes were very low. i had to stay in hospital formore than 4 months.i also had Chinese medicine(herbs),which i am still having now. At present ,my wbc and plt have risen .but they are still under the normal.


ID: 361

Member: Bradley Richard

Email: jon@indepthmkt.com

Diagnosis: aplastic anemia

Date: 5/00

Age: 5

Remission: False

Story: This is Bradley’s dad Jon. Bradley was diagnosed in May of 2000 with SAA He went through the ATG and Prednisone treatment his response has been very slow. His platelets have been around 30000-40000 the last several months. White count is up and down and his hemoglobin is around 10 usually. We are on cyclosporine twice aday and GMCSF twice a week. Basicly just waiting for a miracle since his sister is not a match.


ID: 362

Member: April Hixon/42 yr old Mom

Email: Arkansas2_0@yahoo.com

Diagnosis:

Date:

Age:

Remission: False

Story: My Mom was 42 years old and completly healthy as far as we knew except for some bruises that she had begun get get. We had discussed the bruises but didn’t consider it a major deal. My Mom was in the prime of her life, her first grandchild was born three weeks before she died. Please be careful I never dreamed I would be 21 years old and without a mother to ask advice from.


ID: 363

Member: Jason Melin

Email: marrowj1@hotmail.com

Diagnosis: Aplastic Anemia

Date: 11-25-99

Age: 26

Remission: False

Story: At 24 out of college, you find yourself invincible to anything. You tell yourself that you can handle anything that life can throw at you. Two years later, I realize that life is much more precious and family and friends are too important to even put into words. I was a very active young man and during the fall of 1999 while on one of many hunting trips I noticed that I was always short of breath, even though a I also suffer from Asthma I noticed that I was not wheezing but just couldn’t catch my breath. As the fall went on I noticed that I was bruising a lot, but once again, I was outdoors all the time and walking through the woods you trip and bruising after a hunting trip is nothing out of the ordinary. During deer season, November 6th I noticed petichia for the first time, they appeared on my hands and arms and also around my ankles and feet. But once again I just chalked up to hunting. Finally when I came home for Thanksgiving, my folks couldn’t believe how pale I was, the pitichia were now everywhere and breathing was difficult and I had very bad headaches. Still I just figured it was a flu bug that had to run its course. My mom suggested a visit to the doctor before I flew down to Dallas for business for three weeks. That was on Friday, November 25th 1999. As soon as Dr. Burns walked into the room he ordered labs. Later that afternoon they were amazed, that I was still walking and alive. My initial counts, PLTs >2,000, Hgb, 6.5, and WBC, 0.0. That night I received the first of many to come blood and platelet transfusions. After spending 5 days in a hospital in Fargo, ND I was transferred to the University of Minnesota Hospital, were I met my current doctor and my angel, Dr. Mark Reding. We discovered that my younger sister Tara was a perfect match for a BMT, however we decided to proceed with the ATG treatment. The reason was simple at the time, the risk were much less with ATG, if the first or second treatment did not work Tara has the medicine to heal me. I was in the hospital until the 14th of December. The ATG was very slow to respond I was dependant on transfusions until March 8th, and then after that my counts were very slow to return. This proved to be the hardest part, I knew that I could function and live a normal life but the chance of relapse was ever present and still is today. Finally one year after being admitted to the hospital my platelets made it past the 150,000 mark. Today all three are in the normal range, the low end, but still normal. Two years later, I know that I’m not invincible, I know how precious life is, how important family and friends are for your well-being. But the battle must start within you! You must start fighting the monster from within and with a positive approach. We contain the best medicine of all the positive human spirit that will not be defeated! UPDATE: Jan. 21st 2002 – LATEST BLOOD COUNTS! Hemo – 15.7 WBC – 4.7 Plts – 239,000 – highest ever! UPDATE – NOVEMBER 21st!! Well it has been a little while since I last updated my blood counts but here is some great news to share with you all. On my last check up my platlets were at 266,000, Hgl was at 15.5 and my WBC was at 5.8. If feels good to go to the doctor and not be stressed out anymore. Please contact me if you have any questions or you would just like to chat! Update July 1st 2003, I have been really busy and out an about, everything looks great and the doctors are more than pleased. My counts have stabalized and haven’t fluctuated too much lately! Jason Faith does work!


ID: 364

Member: nicole montague

Email: margot-claire@cwcom.net

Diagnosis:

Date: 16/3/00

Age: 15

Remission: False

Story: m disabled and she refuses to have her friends visit her at home in case they sere me. she has also missed a great deal of schooling in the last two years. she is still on cyclosporin and has regular transfusions but her blood count is not getting any better.my aughter has chanhed from a pleasant child into an aggressive animal. she is constantly attacking me and physically abusing me as i am not able to defend myself. she has tken to smoking and will not be stopped. her behaviour is awfull and i think the cyclosporin is the cause of her change in behaviour. i constantly worry about her future and can only pray that i will be around to care for her in the future. m montague


ID: 365

Member: Howard G. Thorne

Email: howcar.thorne@worldnet.att.net

Diagnosis:

Date: 08/16/01

Age: 64

Remission: False

Story: Just about like everyone else’s although hampered with severe back and leg pain which is probably arthritis. They can’t treat it because of SAA. Going into hospital on 12/26/01 to repeat ATG. Thank you for making this site available. We find it very interesting, sometimes consoling and sometimes frightening but better to know what is ahead of us.


ID: 366

Member: Kathy Meyer

Email: kathy1@htn.net

Diagnosis: What Does Kathy Have? BDL

Date: Sept. 2001

Age: 68

Remission: False

Story: Note from Bruce – Copied to the forum also. I was visiting in NY for my 50th HS reunion. Had a cough that I couldn’t shake. I went to a dr. He said that he would reccommend a blood test, but since I was on vacation I prob. wouldn’t want one. I had 10 days left and said I’d take the test. At 9 that night he called. Blood level was 4.8 and I was rushed to the hospital. Spent next 7 days there and then returned home to Florida. I have had a horrible experience with the hemotologist down here. Went for transfusion on Christmas Eve (which he had written the orders out!). The hospital called him and he said he didn’t know me. So….he is history. My regular dr. is extremely caring and I was getting more info from him than from the hemotolgist who was charging $900 for every office visit. I just want to know what this is and why I got it. What is the general prognosis? (Years?)


ID: 367

Member: Les Bannah

Email: ljbann@isa.mim.com.au

Diagnosis: SAA since 1994 – Cyclosporine

Date:

Age:

Remission: False

Story: Update Tues 26th Aug 2003………………………………Not too bad a try but no cigar, dropping my cyclosporin level with near normal blood counts was looking good for a while but as I dropped below 100 mg per day my blood counts began to reverse – very gradually at first then fairly rapidally. The platletes again being the the most reactive dropping from 260 to 75 over a period of 3months. From my graphs the blood count fall seemed more gradual this time than the last attempt to reduce the dosage and I find that encourging. After 3 months though it was obvious that the counts were not going to hold at any level and we decided to resume cyclosporin A at 200 mg’s per day which I am currently on. Resuming the dosage again had an immediate response in my platlette level now around 100 Hb’s at 12 and climbing gradually. My liver function tests show an elevated level of ALT’s and its still a priority to strive for a lower level of cyclosporin dosage to maintain my counts. From the exercise it appears that 150 or 125 might be a maintainable level and I hope to again wean to that level but hold it there say at 125mg minimum for a long as possible. ..and so we go on. Update Saturday 10 August 2002:……………………………………………………………………. Reducing cyclo further I am now on a dosage of 150mg per day, last blood test was on Friday 2nd August 02, HB 15.3, Rcc 4.6, Wcc 7.8, Neut 3.99, Plat 261. I was extremely pleased with the latest results but no celebrations yet as I have been caught before with good results. I’m feeling better this time round, my head is clearer and apart from a fair amount of tirednes (which is not reflected in my HB level) I’m coping ok. I have my doctors appointment next week and if my next blood test in a month time confirms the results above I hope to drop to a level around 125mg’s. ……………………………………………………………………………… Update Sunday 7th April 2002: I am reducing my cyclopsporine for a second attempt at finding a lower maintainable level. My dosage has been 200mg per day and my levels look good after several years treatment on cyclosporine initially diagnosed 1994 I commenced cyclosporine in 1997. We have started the reduction with alternating 200 -175 -200 on sucessive days for 6 weeks at the end of that time my blood result is still looking good HB 15.6, Rcc 4.7, Wcc 7.4, Neut 3.61, Plat 247, MCV 100. I expect to reduce to 175 mg per day after my next appointment Fri 12th April 2002 and will continue with that till my next blood test in a further 6 weeks time. I’m only experiencing a slight cold at present waking with nasal blockage that clears early in the day – which is not unusual with winter coming on here.So far so good. ………………………………………………………………………………………………………………………………………………………………………………………………………………… April 1994. I was diagnosed with AA in April 1994. My blood counts at the time were Plat 13, Hb 8, Neut < 5%.I was initially Treated in Royal Brisbane Hospital with Horse and Rabbit atgam, but unsuccessiful in both, following that I had a good blood response to prednisolone & oxymetholone but suffered extreme side effects in the first two years.. triggered diabeties, head pressure, nausea along with the effects of very low Hb counts. I do have a good bone marrow match in one of my two sisters (a 9 point match) but the Doctors did not opt for a bone marrow transplant in my case. A transplant has been seriously re-considered twice as my bone marrow has failed 3 times since I was first diagnosed. Three years and 4 hospital admissions later I was put on cyclosporine in 1997 after my 2nd Atgam treatment failed, thankfully have been able to build and maintain my own blood counts since. I commenced on 500mg per day of cyclosporine while at the same time gradually reducing the prednisolone from 50mg’s a day down to zero in 5 weeks and then reduced cyclosporine to around 300mg (150 morning & night) and then gradually to 200mg nightly. We recently tried in 2001 to reduce the cyclosporine to a lower maintainable level but when we got to 100mg’s (50 morning & night) my blood counts began collapsing rapidly. This necessiated an increase back to 300mg until they began to build and then gradually reverted back to 200mg’s which seems to be the optimum level in my case. I should also add that these levels of dosage are of course guaged on patient weight and would of course vary from patient to patient. My normal weight in 1994 was 82kgs and am now 110kg’s in 2002 from the various treatments since that time. I have charted my own treatment and bloodcounts on my computer since 1994 with the co-operation of the doctors & pathology dept’s and have used the documentation at times to prove effects and assist in guiding my treatment. Like most people with AA I have researched AA & blood extensively in the 8 years and I read with interest the comments on vitimins in this web sight … I have noticed several blood effects and in my case can tell that my platelet count has a good and fairly rapid response to shark liver oil as does my Hb to B12 – however it does not sustain nor continue to rise. The Platlet count to shark liver is best and will hold up for a while after a month of taking them. I also (using my own case) DO NOT recommend the use of immune booster type supplements, High doses of Vitamin C etc as this is opposite to the treatment of immune suppressant’s such as prednisolone and cyclosporine. Though normal vitamin supplements are fine. There does seem ultimately to be an autoimmune attack on the blood of AA patient’s by our own immune system regardless of the initial cause of bone marrow failure and immune boosters seem to increase that attack. This is genrally explained as – our killer T cells do not like the look of our blood cells and proceed to kill them off ..but by boosting the immune system I feel only serves to increase the severity of the attack. I’m getting a bit long here as this is only meant to be comments. I have enjoyed visiting your web site and look forward to droping in again I would be only to pleased to help and assist other patients that that have chosen to fight this horrible disease. I have begun to reduce my cyclosporine dosage for the second time – looking for a lower maintainable dosage.


ID: 368

Member: Glinda Miller

Email: glindam@onecliq.net

Diagnosis:

Date: mid Oct.,2001

Age: 74

Remission: False

Story: I would definitely like to hear from you since I am so new at this AA disease. Mine started with extremely blood counts. I have had numerous platelet transfusions. Also I have had numerous blood transfusions. I now go to the Doctor’s Clinic after having been in the hospital much longer that I wished for and last Thursday I was there and had a blood transfusion, We (son, dau-in-law) were just getting ready to leave and for the first time I experienced a reaction to the blood transfusion – an experience I will never forget. If you would and have been in this AA disease for much longer than I have, I would really appreciate getting advice, etc., from you. Thanks in advance. Glinda


ID: 369

Member: Danny Coulbourn

Email: dannyandaudrey@hotmail.com

Diagnosis: SAA on and off since 1983 – ATG 1x Great Response!

Date: 7/13/1983

Age: 31

Remission: True

Story: I was diagnosed with idiopathic AA back in July 1983. Back then, ATG was > just beginning to be researched and many people were hesitant about using > horse serum to treat AA. I was put on androgens – oxymetholone and > prednisone, while I was waiting for a bone marrow match. My little sister > was not a match. Back then, they had hospital beds waiting for me at John’s Hopkins and up in Seattle Wash. My blood counts slowly begin to increase. > I was on oxymetholone for about 5 years. After that time, my counts were at a mild level – hgb – 12-13, WBC- 3000, Plt- 70-90000. After being on > oxymetholone for 5 yrs, I began to form tumors on my liver. One of the many side effects of the very strong androgen. The doctors took me off that > medicine, and I seemed to hold those mild-normal counts for about 15yrs. > Then, after a bicycle accident in 1997, I noticed those dreaded anemic > symptoms – you know what I am talking about. > > Since then, I have been treated up at NIH. I love these guys – Dr. Young, > Dr. Tisdale, and Dr. Kang. And the nurses are the best that I have ever > seen. > > My counts bounced around from moderate to severe for about 3-4 years, then > they just began to plummet in 2000. Before 1998, I never had a blood > transfusion. > I held off the ATG treatment until I had to, mostly my decision and > partially the decision of the NIH doctors, since they did not have much > experience using ATG for moderate AA. Since I seemed to respond to androgen therapy when I was younger, the doctors put me on Danazol. That seemed to > stabilize me for a while. > I began my ATG/Cyclo/Mycophenalate treatment on 1/4/01. That stuff makes > you pretty sick, doesn’t it? Not really at first, but after about 10-15 > days, those antibodies began forming in my body, and I could not hold any > counts – Plts dropped down to 2000. My last blood transfusion was 2/03/01. > In Feb 2001, we noticed that my Retic Abs as well as all of my counts began going up. Today, my counts are a hell of a lot better than last year – as > of 12/19/01- HGB – 13.5, Plt – 105000, Anc – 1150, WBC – 2800, Retic Abs – > 96000 or 3%.As of 3/05/02 HGB- 14.2, WBC- 2700, ANC- 1700, PLT – 119000, RETIC ABS – 2.96% OR 96000, MCV- 102. > I am feeling great, my wife and I have our first little girl on the way in > March. I wish that WBC/ANC would go up more, but I am just thankful that I am living! Stay positive everyone! Don’t try to control this thing by yourself – Give up that control and give that decision over to God. Ask God to heal you physically, mentally, and spiritually everyday! God Bless all of us! Get in touch with the National Institutes of Health! Update as of 11/28/2002. HAPPY THANKSGIVING EVERYONE! It has been almost 2yrs now since I first got ATG/Cyclo/Mycophen and my counts are, I believe, the best ever. As of 11/01/2002 – HGB-14.0 WBC 3.4 ANC – 1.9 HCT – 40.0 PLT – 130000 and MCV – 101.0. Based on my MCV count, my bone marrow is still being stressed a bit. I will be going up to the NIH (Bethesda, MD) for my 2yr follow-up and Bone Marrow in January 2003. My little girl is now 8 months old, and I am glad that I am feeling well so I can keep up with her and my wife. Two years ago my CBC looked like this: HGB – 7.5 WBC – 1.8 ANC- 0.5 PLT – 18000 (these got as low as 2000) HCT – 20.0 and MCV – 115.0. I am now approaching my 20th year living with Aplastic Anemia. Seek Help from NIH. These doctors and nurses are the best in the world. DC -SAA on and off since 1983 – ATG 1x Great Response!


ID: 370

Member: Randy Ramage

Email: randy.ramage@btopenworld.com

Diagnosis: SAA June 26 1X ATG

Date: June 23/01

Age: 48

Remission: False

Story: Update as of March 2002 Randy passed away from Fungi Septicemia 11 days after a bone marrow transplant from his sister Wendy. As of Jan 1/02 Hi! I am a Canadian who has lived in England with my Irish wife Eileen since 1984. In June I had the typical AA symptoms of spontanious bruising, small red spots (petechiae), out of breath and heart racing after doing a small amount of exertion, and a cough that I couldn’t get rid of. In seeing a Dr. (a haemotologist) I was told I had dry lung and to put my head over hot water with some Vicks in the water. Fortunately she also suggested a check of my blood (at my convenience). I went later in the week and was told it would be 2 weeks before any results. I was contacted later the same day and rushed to the hospital. A week later after more blood tests and bone marrow aspirations (checking the marrow) and trephines (checking the bone cellularity) I was diagnosed with severe AA. I stopped working and started researching the condition and started building up a glossary of all the terms I had come across to ensure I really understood what I was dealing with. Eventually I made a web site with all my research on the subject and a glossary. It is at http://aamdsglossary.co.uk My Hb count tries going down to zero but I find that if I catch it at about 8 (should be 13 to 17) it’s not too bad. Platelets have been down to 1 rather than the 150 to 330 they should be. That results in not only bruising and small red spots all over but also a disorientation and mental muddiness. I get my transfusions of those if they go lower than 18. My neutrophil counts are usually .1 and should be 1.7 to 6.1 ( x 10,000,000,000 per litre). Can’t do anything about that. I had the ALG (Horse version) starting September 27th 2001 and went through the chills and shakes normally experienced with that. I didn’t find it difficult, just interesting. Bloated up with water retention and gained almost 20 pounds which was a bit uncomfortable but only very mildly. I had a central venous catheter put in rather than the Hickman line as I had read about the Hickman lines getting infected and wanted a more temporary line in. They are much the same but the central venous catheter is used for more temporary work. I actually really enjoyed my 2 1/2 weeks in the hospital. I was pretty euphoric with the Prednisolone (corticosteroids can cause that or depression) and got a lot of really good work done on my web site. Came home and was weaned off the Prednisolone and emotionally crashed (which was caused because my adrenals were not producing any corticosteroids as my pituitary gland which monitors the production of it was seeing all the Prednisolone and was telling the Adrenals that none was needed). Recovered after 2 days but it did take me by surprise as I am normally very emotionally stable. Since then I have been on Cyclosporine 100mg 2x per day, and the usual antibiotics, Acyclovir 400 mg 2x a day (an antiviral), Diflucan 50mg 1x a day(antifungal), Lanzoprazole 1x a day (anti-ulcer). I am not getting any side effects from any of the medication. I am also taking vitamins as I know antibiotics and the Cyclosporine deplete the vitamin/mineral levels causing physiological and mental problems which could be taken as being the side effects. I take 600 iu of Vit E, a B100 complex, 500 mg of Vit C each time I take my antibiotics (4x per day as I have read Vit C increases the effectiveness of antibiotics), Vit A/D 10,000iu . I am also taking Calmag to offset the possibilities of osteoarthritis along with Glucosimine Sulphate with Chronditin (needed to build up cartilage). I am taking Astragulus to build up stem cell population, zinc to enlarge and activate the thymus (training gland for the T lymphocytes) and Hunza apricot kernals (best source of Vitamin B17) to counter the cancer causing effects of the Cyclosporin and ALG. I have my nutritional studies info at my web site apart from the Vitamin B17. No change in blood levels yet. This week I get back the results of a bone marrow aspiration and trephine I had done on December 17th. My Dr. had been talking about a BMT if the results are negative rather than another course of ALG as my sister & I are a perfect match. Fortunately I have 5 brothers & sisters and my sister Wendy & I are the only ones matching. Overall, apart from the concern the AA condition has caused my wife & family, having the condition has been a very positive experience. I have become much closer to my wife, family & friends. I have realized I can either take on the beingness (wear the hat of) a victim or a solver of problems (as Bruce has done). Deciding to do as much study on the subject as possible puts you in the beingness of a solver of problems rather than a victim of the problem. As a victim you are being an effect and as an effect will get ill easier and things hurt more as these are all experienced as an effect. When I am looking at my condition from the viewpoint of “these are the circumstances now…is there anything else I need to know before I decide where I am to go from here?” I find I feel more in control and bigger than my condition. There is a lot to know about the condition and you need to find out all you can so you can monitor the treatment you are getting. Just yesterday, after the first infusion of platelets, I had failed to stop the flow after the bag emptied and of course it almost emptied the line. The male nurse changed the bag and just put the line into the next bag and went to leave. I called him back and said “wouldn’t it be better to get all the air out of the line (about 10cc) before it goes into my veins?” Of course it was changed as it was enough air to kill me. I guess the nurse had quite a few patients and had more attention on the next job than me. This isn’t the first time I have had to correct my own treatment. It can only be done if you know about your condition enough so that you know what is going on. I hope this helps someone. I wish you all the best wishes for 2002. Thanks Bruce for having such a great site! Love Randy


ID: 371

Member: Rosalino Gomez

Email: carla_gomez@honduras.com

Diagnosis: Aplastic Anemia

Date: december 14, 2001

Age: 64

Remission: False

Story: This is actually my father’s story. He only had a little fever and a slight headache and decided to go for his usual checkup. When his tests came back he was inmediately hospitalized. He was diagnosed with severe aplastic anemia and at this point we had no idea what it was. We live in Honduras and where we live there are only 3 blood specialists. So far he’s had 3 transfussions and he’s received a lot of platelets. He’s taking a treatment, which at this moment I have no idea what it is, but we are considering flying him to the states in order to find an alternate treatment. This website has been really helpful and I hope that if any one of you who reads this can give me any advice or suggestions. I will highly appreciate it. I got some responses and you have no idea how greatful I am. My dad just got out of the hospital today. His levels are at hgb:10 and platalets:14, and we wish to transfer him to the u.s. for a better treatment, because right now he is just on danazol and prednisolone. If any of you are aware of any specific hospital or dr. that I should contact. Our first options are either Houston or Miami. He’s 64, so a bone marrow transplant is out of the question, but I’m interested in finding out where we can try the ALG treatments, please, please send me a message because we are hoping to get him to the states ASAP. Thanks so much, and good luck to every one of you who reads this and God Bless! Carla


ID: 372

Member: Matt Randall

Email: Bran947@worldnet.att.net

Diagnosis: SAA 2/00 ATG response relapse 10/01 response again

Date: 2/00

Age: 18

Remission: True

Story: Responded really quickly after initial ATG/cyclo treatment. Platelet counts started dropping 12/00 while decreasing cyclo very slightly. Increased cyclo to therapeutic level. Counts continued to drop and had second ATG 10/04/01. Again responded very quickly (actually twice as fast as first time). Dr. tells us really quick responders more likely to relapse than slow responders. Anyway, doing well for the moment, although psychological problems involved in second episode. First time he handled very well. This is Mom talking.


ID: 373

Member: Andrew Thomas

Email: andrew.home@virgin.net

Diagnosis: SAA Oct 2001-partial response to ATG-in remission

Date: 12th October 2001

Age: 38

Remission: False

Story: Hello from Cardiff, Wales, UK. This is my story. Waking up one Friday in early October 2001 and felt so tired I knew I wasn’t going to make it to work (thought I had the flu). Went back to bed and slept for another 6 hours! Next day developed mouth ulcers. Went to my GP (family doctor) on the Monday, by which time the inside of my mouth resembled something out of a horror film…put me on antibiotics. Than had a gum bleed which went on for 12 hours before clotting. Noticed spots on lower legs. Following Saturday morning, woke to find large bruises on the lower half of my legs, one of which was bleeding. Booked in for a blood test on the Monday. GP rang within an hour of the test and told me to pack my bags as I was being admitted as an emergency case. I either had A.L.L. (Leukaemia) or AA. Bone marrow aspirations confirmed AA. Platelets were 4, Hb around 8, WBC 1.83 , and neutrophils 0.08. Had immediate platelet transfusion and spent my first ever night in hospital. Didn’t sleep a wink. It was decided to test my two brothers, but unfortunately neither of them was a match for BMT. Started ATG on 25th October. Not too bad, particularly after the first day when the rigours (shakes) stopped.Platelet & RBC transfusions continued every few days. My WBC suddenly dropped to 0.04 on 4th November, and Neutrophils to 0.01, i.e. nothing. Left hospital & went on to 75 mg Prednisolone for 16 days, started to get muscular & joint pains which lasted a few weeks on & off. Then on Cyclosporin 200mg/day together with Itraconazole, Cipro and mouthwashes. My WBC count climbed back to 0.85 & Neutrophils to 0.34, so something happening, albeit slowly. UPDATE 08/08/02 – still here! 5 months after second ATG (March 2003) – sudden improvement in counts – WBC up to around 1.30 & most importantly neutrophils hovering around the bottom end of the ‘comfort zone’ at 0.75. Medics want me to go for third dose of ATG with oxymetholone (anabolic steroids – known liver carcinogen & lots of other nasty possible side effects). Experimented with chinese herbs but lost faith after the herbalist was stoned at the last visit. Went to see another guy who sold me deer horn aphrodisiac. Not v.helpful. Improving diet, developing positive mental attitiude & doing visualisation therapy encouraged by my GP. I feel much better, although still transfusion dependent for blood (every 2/3 weeks) & platelets (7/8 days). UPDATE 24/09/02 WBC now at 1.80 & neutrophils increasing every week (now 1.30). Two recent retic counts showed 52 & 53 (up from 15 & at bottom end of normal range) but last week’s fell back again. Still, if the white cells can get going again then why not the red? Reading ‘Optimum Nutrition Bible’ & making significant improvements to diet. Looking into Epo products such as Procrit/Epogen/Aranesp. UPDATE 19/10/02 WBC & neutrophils holding up – still transfusion dependent for blood/platelets. Turns out my natural EPO levels already v.high so no point in trying to boost them. Had my Hickman line out after one year (a record!?). UPDATE 18/01/03 WBC 2.15, Neutrophils 1.15 No hospitalization for infections since last June. Need for transfusions slowing down. I’ve had Platelets every 7-9 days since Oct 2001. Recently going 12-13 days. Guess what – they HAVEN’T DROPPED this week! (17) That never happened before…… Apparently SAA destroys 90% of the marrow stem cells. The ones that are left have to try & clone themselves, which takes a long, long time. It’s been 15 months now since diagnosis, but I’m feeling better about the future. POSITIVE THINKING. Good luck. UPDATE 20/03/03 – No platelet requirement since 03/01/03. Last transfusion of Red Blood Cells 8 weeks ago. Hb still 9.1 (WBC 2.75 ANC 1.66 platelets 22) AND THEY’RE ALL MINE. Going back to work 80% of full time. UPDATE 30/05/03 – Still independent of transfusions. Hb up to 10.3 & platelets still moving up – now at 33). Prof thinks the autoimmune response is backing off. Been back at work full-time for nearly two months. Walking up to five miles & also cycling. UPDATE 21/06/03 – Platelets now up to 40, and Hb at 10.7. I’m back to the hospital in 3 weeks for a bone marrow aspirate & trephine because my doctors want to see ‘what’s going on.’ Something to look forward to…….. UPDATE 22/08/03 – Platelets up to 57, Hb at 11.7, ANC 1.9. Bone marrow test inconclusive -cellularity apparently less than 20%, at least in the part they tested. Consultant thinks recovery may be patchy, as ‘obviously something is happening.’ Theory is that second ATG saw off the Autoimmune response, and now the marrow is slowly recovering. Played two hours of tennis last week! Oh, and turned forty at the end of July. UPDATE 18/10/03 – Platelets dropped back slightly, but, two years post diagnosis, whites & ANC in normal range for the first time at 4.3 & 2.65 respectively. Hb still 11.7. Now two months between hospital appointments for blood tests. Newly-diagnosed welcome to mail me at: andrew@chrisjohn.co.uk. My new target, after 60 blood transfusions, is to have to visit the hospital so they take blood OFF me (Iron levels a bit high) need to get to 13.0 Hgb first. Watch this space.


ID: 374

Member: Andrea

Email: GlamGurl2219@aol.com

Diagnosis: AA Oct 01; ATG, Cylco, G-CSF, Prend; Good response

Date:

Age:

Remission: False

Story: Well here’s a little update on me. It’s been almost 2 months since my last dose of ATG. My doctor’s have been concerned about my liver lately though because high doses of cyclosporine were begining to bother it. They were almost positive my elevated billiruben was due to the drug toxicity of the cyclo. because my LFTs were all becoming normal again and everything else was in check, but they wanted a liver biopsy to make sure. I’ve been off the cyclo for about a week now and my counts have still remained. So Monday I was to go in for a “routine” liver biopsy and a third bone marrow biopsy, to see where we stand. My routine liver biopsy caused some internal bleeding (not too much) and I had to get some transfussions to counteract that. So I was in the hospital until yesterday! But the good news is the bleeding stopped, and actually they said bleeding is pretty routine after those types of procedures but with AA your counts are low to begin with so its a little more urgent obviously. The other good news is my bone marrow looked “beautiful” according to my doctor. When they first took it back in Oct. it was all fat and now she said it is mostly blood, not perfect yet but she said I certainly could live with the type of marrow I now have. Also the liver damage is not anything irreversible. They are keeping me off cyclo for another week and then starting me on half the dose,100mg. I started on 350mg then went to 200mg. They at least want me to get 12 wks of cyclo in me. ——————————————————————————–


ID: 375

Member: Marla Brown

Email: Talithakumi@mylifeline.net

Diagnosis: NATURAL TREATMENT

Date: October 1999

Age: 37

Remission: True

Story: http://www.geocities.com/marlakins/index.html


ID: 376

Member: Brittany Butler

Email: ashurabutler@yahoo.com

Diagnosis:

Date: June 2000

Age: 8 years

Remission: False

Story: My name is Ashura Butler my daughter Brittany Butler was diagnoise with Aplastic Anemia June of 2000. She is eight years old and as of today she is doing alright. She now goes to the doctor once a month. When she was first dagnoist she was in bad shape. They don’t know how she got this disease. Six month prior to her diagnoist she was bitten by a dog and we had her treated. We didn’t know if the dog had rabies So she recieve the numerous shots. My feeling is that Brittany had a reaction to the shots and that is how she got Aplastic Anemia. They tested my husband , son and my self and we were not a match. I don’t know what else to do. I really don’t know about any programs to join. Right now Brittany is doing well. She haven’t had a transfussion in about two years now. She takes a shot twice a week and and she takes Cyclosporine twice a day I guess I should be happy. But I would feel better if I knew how she got. I am thinking of moving my familly to Miami and I don’t know if it is in her best intrest to change doctors exspecially since she is doing so well. This is my delema now I just don’t have the answers


ID: 377

Member: Jean Smith

Email: Jsmithwyo@aol.com

Diagnosis:

Date: 12/97

Age: 60

Remission: True

Story: I had, like you been extreamly healthy. I started to have breathing problems and swelling. I had 5 bone marrow tests before they finially came up with the correct d/x. I was diagonosed with hairy cell luekemia, a mass in my chest, and finally by 3 drs. 4th level lympomia, they were going to start chemo. My daughter pulled out to Ca. and there I was finally dx correctly. My counts are quite steady.


ID: 378

Member: Shannon Savage

Email: mayne.kelly.t@edumail.vic.gov.au

Diagnosis:

Date: 30.0102

Age: 26

Remission: False

Story: Diagnosed today, after many tests and days of wondering. We don’t know much about the disease but would like to learn more.


ID: 379

Member: Piusprajanto

Email: ivitus@yahoo.com

Diagnosis:

Date: Mid of 1997

Age: 25

Remission: False

Story: at the first time, I had a very bad condition and the doctor predicted that I was suffering from hepatitis C. I had the blood tranfusion. My haemoglobin at that time was just 2. ..but then the doctor said that I was suffering from anemia aplastic. my family was so shocked and i my self cannot imagine what would happen to me. today i have to have blood tranfusion every three months and it was so hard for my family because in my country the cost of the medicine and also the tranfusion are so high. by the way i am glad to have friends who have the same experience as me and i hope we can support each other. Thank you and God be with you


ID: 380

Member: pius prajanto

Email: ivitus@yahoo.com

Diagnosis:

Date: mid 1997

Age: 25

Remission: False

Story: I was found in a bad condition but the doctor said that I was suffering from Hepatitis C after I had further investigation and also biopsi my doctor said that it was aa and at it made my family and I shocked and so confused but now it is ok although when the time for my transfusion come we have to think hard how to get money because in my country the medicine and also the cost for tranfusion are so high thank you


ID: 381

Member: Suzette Ramos

Email: aslramos@home.com

Diagnosis:

Date:

Age: 38

Remission: False

Story: I have been strugglinh with so many CFS/Fibromyalgia type symptoms over the past 3 years that I have come to feel that there is no hope of improvement.. My Dr.’s always say I am “Borderline Anemic” but never beyond that level.. However, after reading an article on a plane I was taken by the symptoms that were listed: 1. Shortness of breath, 2. Fatigue, 3. Ghostly white pallor in the mornings, 4. listless, 5. Recurring yeast infections, 6. constant headaches, 7. Vaginal mucous/light spotting in mucous.. These are my most noticable symptoms along with an overall muscle chronic pains.. I hate visiting Dr’s because they only look for the majors.. PLease provide me further information and how I can be screened.. thank you, Suzette


ID: 382

Member: Dena Panayi

Email: greekprincess348@yahoo.com

Diagnosis: SAA Jan/2002 CytoxanWORKED 19yrs.old

Date: January 9, 2002

Age: 18

Remission: False

Story: I’m 18 yrs. old and on jan. 9th, 2002 I was diagnosed with severe AA. When I was first admitted to the hospital my platelets were at around 6,500, and I really don’t remember what my other counts were. It’s really weird because I was reading everyone’s stories, and I can relate to so many different things that other’s have written. I haven’t started treatment yet, other than platelet and red blood transfusions. Four days ago i got a portacath put in, it still feels odd, but daily it is getting better. My doctors (one in Indiana, and one at Northwestern Memorial in Chicago) are talking about doing the ATG, cyclosporin, prednisone treatment since my only full brother didn’t match my bone marrow. Right now I’m just praying that it will work. I would really like to talk to people who have gone through the treatments already and basically talk with anyone. I’m so happy (and at the same time sad)to find people who truly understand what i’m going through.——–UPDATE 6/21/02 Ended up going with the high-dose CYTOXAN(Cyclophosphomide) treatment, Because my Dr. in IN had suggested it and i read many stories on this sight and it seemed to me that there were a lot of harsh side effects with other treatments, and many relapses. Thanks to this great sight and ESPECIALLY to MINDY PEMBER whose story that helped me choose the chemo, not to mention she flew to Indiana when i was in the hospital to see me and give me support, it meant a great deal to me to be able to talk to her and understand everything i was going through. I was in the hospital for 3 months because my WBC were at .1-.2 I went home with those counts and after a couple of weeks my WBC went up to 1.6. I was having to get platelets every 2-3 days. But I haven’t had to get any type of blood for 3wks. now. PLTs are at 29000 today my WBC has been going from 2.0-2.4 and I think (hopefully) that my RBC are starting to go up on their own because I get my blood tested now 2x a week instead of 3x, and it had gone from 7.5 to 8.0. So I am very optimistic about things because after a long time things seem like they are starting to get a little better. And although it hasn’t been easy w/ the chemo(nausea, weight/hair loss, fear of infection, depression, etc.) they say that it is pretty much a cure and i don’t have to take any pills or anything now. So I am just hoping that everything will be okay, but you never know what tomorrow brings, so you can only hope and pray. Good luck to everyone! UPDATE 8/19/02–Hemoglobin 12.0, WBC 2.7, Platelets 36,000 UPDATE: 10/18/2003– It’s been almost 2 yrs. since I found out I was sick and I am doing great. Hgb:13.8 WBC:5.3 and PLT:117,000. I am back at school and at work, and the only thing that happens is I get tired a little bit easier than other people, but I feel like I’m back to normal now.


ID: 383

Member: Joanne Hall

Email: jjjahall@juno.com

Diagnosis: SAAFeb02 ATG/Cyclosporine/Steroids – Complications

Date: 2/13/2002

Age: 75

Remission: False

Story: My 76 y.o. mother was diagnosed in mid-February. She was treated at Massachusetts General Hospital with ATG/Cyclosporine and Prednisone. After the 2nd day of ATG, she developed pulmonary edema and suffered a minor myocardial infarction. Prior to discharge, she developed bilateral pleural effusions (had a history), a urinary tract infection and oral herpes simplex. She went home on Cyclosporine and Amicar and receives regular platelet and RBC transfusions. She has experienced some eye swelling over the past 2 weeks. My mom was a strong lady. When she was diagnosed, she just felt tired. She is now recovering very slowly. We are hoping she will feel stronger soon.


ID: 387

Member: keith/dad to Regan

Email: kdy@attbi.com

Diagnosis: AA Jan 02 no response to ATG

Date: 1/07/02

Age: 17

Remission: False

Story: We took Regan to the doctor between Christmas and New Years with bruises on her legs. At first thought to be ITP but after a bone marrow test diagnoised AA. They tested her 2 brother’s for a match but didn’t get one so she got the rabbit serum on the 10th of Jan. 2002. It is now the 15th of April and we haven’t seen any change. The doctor is talking cytoxin and maybe a BMT. She is getting platelets and red blood cells every week and sometimes more. It is hard for a 17 year old to accept what is happening and we are having a hard time also. We just keep praying and taking it a day at a time. I wonder if there are any other teenage girls with this condition that have been down the road a little farther and can help Regan face up to this all? Thanks, Keith and Linda


ID: 388

Member: David Stidham

Email: hollynicole_10@yahoo.com

Diagnosis: Father died of SAA comp March 2002

Date: 2001

Age: 56

Remission: False

Story: My father David’s symptoms started in about ’98. He had recurrent pneumonia, and several blockages in his heart. At first, it seemed that his heart was the only problem, but later we learned that he had about 1/3 of his lungs to breathe with. He continued to be short of breath and blood tests confirmed that he was anemic. At that time his white blood cells were okay. He had been a smoker for probably 40 years and had stopped smoking for about 2 years when he found out about his heart blockages. He continued to get recurrent bronchitis and pneumonia. He started spitting up blood one night and was put on prednosone which made him very easily agitated. After that everything went downhill. He had a quadruple bypass surgery and that went fine. His lungs continued to bleed though. He continued to get weaker and weaker and is now in the hospital. His white blood count is .5, and he doesn’t think he will make it home this time. He was a painter for years and we wonder if maybe it was the chemicals in the paint. It could have been because he drank for many years, we have no clue. I just wish someone could find an answer to this. He was given horse serum last month. It hasn’t worked yet. A bone marrow transplant is out of the question because he is in too bad of shape. If anyone has any answers for me or words of encuoragement please e-mail me at hollynicole_10@yahoo.com. Thanks March 26, 2002 David died on March 4, 2002. He died of Pneumonia and a myocardial infection, which resulted in a heart attack. He was on a respirator for a week. My mom said that he used to wash his paint brushes out with industrial benzene. Maybe that could have been the cause. So far no-body has e-mailed me and I was really hoping someone would talk to me about this who has been through it too. It has been almost 2 years since my father died. i am now a medical laboratory technologist. i have really learned a lot about aplastic anemia. sometimes i feel like my father could have been helped and i blame the doctors for not catching his disease soon enough. other times i feel like maybe he didn’t have aplastic anemia at all, and he could have been misdiagnosed. it is just so hard to go through something like this. it is so hard to understand a disease that has no definite cause or no definite treatment. i know that a bone marrow transplant could have been the only cure for my dad, but there was just no possible way for him to get one due to the progression of his disease. i just hope that other people who are diagnosed with this disease have a better chance at getting better than my father did. if your disease is caught soon enough there is always a good chance that you can be treated and cured. i just hope that no one reads my story and gets discouraged. i was in a lot of pain when i first started this story, but now i have come to accept the fact that this disease took my father whom i loved so very much. and i know that wherever he is he would want me to tell other people with this disease not to give up hope, because hope is what kept him going for so long. he never stopped trying to get better. he never got discouraged. he always cooperated with every doctor. he was a great inspiration to me. and i hope that one day there will be a real cure for this disease and no one will ever have to suffer through it again.


ID: 389

Member: sharon storey

Email: kintai@bigpond.com

Diagnosis: SAA 88 96 transplant 2001 relapse

Date: 12/11/88

Age: 46

Remission: True

Story: Diagnosed in 88 been through the mill had transplant in march of 96 successfull untill august of 2001 when i relapsed and have started the regime of treatments again Can’t say that i thinks very much of having AA but i will never live my life around this rotten disease it has to live with me i like all the things in my life and i will keep on living it to the best that i can. AA will not stop me. Well here i am back in the hospital with counts that are pretty miserable………….and tomorrow i will know what the hell we will be doing…………..so hopefully i will be able to let u all know what happens……………..cya


ID: 390

Member: DAVID STEVEN ANDES

Email: ANDES7@AOL.COM

Diagnosis: Father with SAA

Date:

Age: 36

Remission: False

Story: MY FATHER HAS APLASTIC ANEMIA, AND I AM TRYING TO FIND OUT AS MUCH AS I CAN ABOUT THE DISEASE. SO I CAN PASS IT ON TO MY MOTHER, WHO IS VISITING HIM AT THE HOSPITAL EVERYDAY. THIS WILL HOPEFULLY HELP HER WHEN SHE TALKS TO THE DOCTORS. HE WAS JUST ADMITTED TO THE HOSPITAL LAST FRIDAY FOR AN INFECTION. AND THE DOCTORS SAID THAT HE MAY ONLY HAVE FOUR TO SIX WEEKS TO LIVE UNLESS THE INFECTION IS BOUGHT UNDER CONTROL.


ID: 391

Member: Victor Padilla

Email: MIRIAM1227@AOL.COM

Diagnosis: SEVERE APLASTIC ANEMIA

Date: 2/27/02

Age: 9YR

Remission: False

Story: MY SON VICTOR PADILLA J.R. WAS A NORMAL HEALTHY 9 YEAR OLD. UNTIL HE WAS DIAGNOSED WITH APLASTIC ANEMIA . I`M TYRING TO HELP HIM .IF ANY ONE SEE`S THIS PLEASE WRITE BACK WITH ANY HELPFUL INFORMATION .THANK YOU FOR YOUR TIME. VICTOR S.R.


ID: 392

Member: Joanne Hall

Email: jjjahall@juno.com

Diagnosis: Mother has SAA

Date: Mar 2002

Age:

Remission: False

Story:  My mother is a recently diagnosed severe AA. I had a question about whether others take Amicar to prevent bleeding. My mother takes a liquid form 4 times each day. I am not sure if it isn’t causing a lot of her side effects. Fluid around the eyes, some dizziness.


ID: 394

Member: Venkatesh Thalanki

Email: tvenkat@hcl.co.in

Diagnosis: Father has SAA

Date:

Age: 26

Remission: False

Story: My father is suffering from Aplastic Anemia, for the past two months. The doctor first, confused this disease was MDS, and we were taking medication for the same. I request you to add me to your mailing list.


ID: 396

Member: TAMMY WRIGHT

Email: TAMMY@ORALSURGICALINSTITUTE.COM

Diagnosis: SAA ATG Worked

Date: AUGUST 1987

Age: 33

Remission: True

Story: I WAS IN MY FIST YEAR OF COLLEGE WHEN I NOTICE LITTLE PURPLE “DOT” ALL OVER MY BODY. MY FATHER IS IN THE MEDICAL PROFESSION AND HAD ALWAYS SAID “JUST TAKEN AN ASPRIN FOR THAT….” AND THANK GOD HE DID NOT SAY IT THAT TIME. I WAS DIAGNOSED WITH HYPER PLASTIC ANEMIA AT FIRST AND THEN SEVERAL MONTHS LATER APLASTIC ANEMIA.AT AGE 18, I SIGNED SO MANY FORMS, BASICLY AT THAT TIME I FELT I WAS SIGNING MY LIFE AWAY, I SCARED ME!BUT… I WAS TREATED AT VANDERBILT BY DR JOHN GREER WITH AN EXPERMINTAL DRUG AT THAT TIME KNOWN AS ATG OR “RABBIT SERUM”. WITH SEVERAL TRANSFUSIONS BEHIND ME, SEVERAL ANTI REJECTION DRUGS,SEVERAL BONE MARROW ASPIRATIONS, AND THE BLESSING OF FRIENDS AND FAMILY, AND THE KNOWLEDGE OF MY DOCTOR, I AM LIVING A HEALTHY NORMAL LIFE. I HAVE A 3 YEAR OLD SON THAT TO ME AND ALL MY DOCTORS IS JUST A MIRACLE IN ITSELF. GOOD LUCK TO ALL AND DON’T GIVE UP HOPE!


ID: 398

Member: Angie

Email: angie_lin@hotmail.com

Diagnosis: Mild AA

Date: March 2002

Age: 19

Remission: False

Story: So far so good. Though my bone marrow is mostly empty, my blood cell counts has remained stable. Thanks be to God!


ID: 399

Member: Doretha

Email: dmorton@bpsinet.com

Diagnosis: SAA July 99 ATG Remission

Date:

Age: 54

Remission: True

Story: Hi, Bruce–I just came across your story this week and was fascinated. I printed it off an read it all this weekend. I, too, have AA–I’m 54, was diagnosed in July, 1999. I’d never been sick a day in my life. Anyway, my story is very long, too, but in a nutshell, I went to Indiana University Hospital, Mayo Clinic and ended up back at IU for Atgam, cyclosporine, etc. Reading your story brought back lots of memories–wow! I had atgam in September of 99, didn’t respond, had transfusions, spent lots of time in bed (I’m a divorced teacher, kids are grown, thank goodness, but only 1 income to survive on). Finally started getting some disability from teaching, eventually qualified for SS disability, too. In May they put me on Procrit injections–once weekly–and my counts started to slowwwwwly improve. Our teaching contract would only allow 2 years for a health leave, so I had to either go back to work or retire. I really wasn’t financially able to retire yet, but my counts weren’t good enough yet. The doctors said that I was alive, do what the living do, or whatever I thought I could do. I decided to try to go back to work, thinking maybe I could take sick days if I had to, then maybe qualify for another leave. Well, about December, my counts started improving and here it is May and I’m still at it–not without some problems in the meantime. Last fall I came home every night, went straight to bed, got up the next morning and could barely get out of bed. I took sick days like crazy, but they understood and knew that I was doing the best I could. Doctors say I am in remission now–platelets around l40,000 ( 6000 at lowest), hematocrits are running around 34 right now. I get a blood test every couple of weeks (or anytime I get extremely tires). Oh, also, they doubled the procrit injections before I started back to work to bump me up, then in December took me off completely. Right now, I’m not taking any meds–just a multivitamin, folic acid, and prozac. It’s been a real roller coaster. I had several friends wanting me to do the macrobiotic route but I never did. Others were heavy into herbal, etc. etc. I stuck with the doctors. I’m a pretty optimistic type person and I never felt– even at the worst times–that it was a curse. I just accepted it as my lot. Wish there was something I could do to help. You’re very lucky to have a supportive family and group of friends. I don’t know what I would have done without mine. I have 3 daughters–2 nurses, married, 3 grandchildren. They all live close and were around constantly to help me. I am so proud of them. Hang in there. I’ll keep up with your entries. If I can do anything, please don’t hesitate to ask. Doretha/Indiana


ID: 400

Member: Natalie

Email: nataant@access.sanet.ge

Diagnosis: Aplastic Anemia

Date: 2001

Age: 23

Remission: False

Story: Hi My name is Natalie. I live in Tbilisi. I am 23. I was diagnosed AA last year (2001) in September. I read lot of information about AA and think that try alternative medicin. I hope that everything will be OK and then I will inform you everything and after be able to help others too Hugs Natalie


ID: 401

Member: Peter , Dad to Stan Lim

Email: signaldot@mbox.com.au

Diagnosis:

Date:

Age:

Remission: False

Story: New email: fibogann@pd.jaring.my <> Diagnosis ========== Stan discovered petechiae on his body 1/2/2002 and thought it was sunburn as he had been to the beach. A visit to the doctor who ordered a blood test the next day necessitated him to be put into emergency for a platelets transfusion as his platelets had fallen to 2K. A bone marrow aspirate showed Aplastics Anemia The doctors and haematologist recommended bone marrow transplant as he was young, but immediate blood tissue typing indicated no sibling match. The doctors recommended that Stan be taken off school for a year to tackle this disease and he was devastated. Two weeks on predisolone itself yielded no response and the doctor rang up to say we should attempt ATG. I had read extensively on ATG as a treatment and felt we had no other alternative but to proceed provided ATG was given together with cyclosporine as this would increase the chances of response greatly with cyclosporine. His neutrophils was 0.1 and white cells count was 1.8 and haemoglobin was 13.3 on 6/2/2002, meaning his red blood cell line was still fine but the other two bloodlines were in trouble. <> ATG TREATMENT ============== The ATG treatment was for 8 hours a day for 8 days. He did not have any complications to the ATG treatment except he could not swallow after the third day of ATG, he had mouth ulcers and he was constipated. The predisolone gave him a rounded cheek, hand tremors, upset stomach, off and on pains in his arms and chest. Post ATG, his blood counts all fell further, until his haemoglobin fell in tandem. Stan had to be transfused every 5 to 7 days when his platelets fell to 10K, and when he had to be transfused with red blood cells too, we decided to proceed to assist the healing process by alternative treatment. <> ALTERNATIVE COMPLEMENTARY TREATMENT ====================================== After an exhaustive research into alternative methods of treatment, we felt any alternative treatment should be able to co-exist with western medication and should not clash with drugs currently used. This necessitate finding a western trained doctor who is familar with Aplastics Anemia, and who is trained to a very high degree of herbal medicine and who has particular experience in using herbal medicine to treat Aplastic Anemia patients and whose treatment has a high success rate verifiable by emailing previous patients. Consultation was done by emailing and after sending him the blood counts records , a herbal supplementary program was prescribed. However the herbal preparations were delayed at customs due to inadequate documentation and with the blood counts still falling, the doctor recommended that we begin shark liver oil therapy while awaiting release of the herbs. <> SHARK LIVER OIL THERAPY ======================== The shark liver oil worked to stabilise the falling blood counts and within two weeks started to indicate improvements to platelets, WCC and neutrophils. Beginning from that time onwards, Stan became transfusion independent, as the shark liver oil begin to help his bone marrow function. <> HERBS ====== The herbs were in capsule form and as a herbal tea tonic. The herbs and tea worked according to the general projection by the complementary doctor’s timing. He told us the herbs worked fast and within 2 to 3 weeks we would see improvements, and it was so. Stan’s platelets was the first to improve with 10K increase every 4 days and then lately it jumped 25K a week with the effect of the herbs and shark liver oil working together. <> INTERNATIONAL BONE MARROW DONOR SEARCH ======================================= As there was no sibling match, an international search for a bone marrow donor was launched, and a caring potential match was found in Taiwan with detailed blood tissue typing now in progress. However the bone marrow specialist feels the bone marrow transplant is not required as Stan’s blood counts are improving very well. <> LATEST CBC ON 30/4/2002 ======================== Haemoglobin= 10.2K Platelets = 152K WCC=4.4 Neutrophils=3.0 Blood counts are still improving. We are looking forward to tapering off the cyclosporine which suppresses his immune system and delayed a cough infection and bronchitis from recovery. To treat this, corydceps was used as black seed oil ( nigella sativa ) was not obtainable , as a first preference to clear the cough. <> CLOSING COMMENTS ================= We were intrigued that Aplastics Anemia is a hard to cure rare disease in the western world whereas in China it is defined as a common blood disorder with patients totalling around 500 a year for a district hospital in China while in America the statistics show possibly 1 in 2 million. In the western world the sole cure is Bone marrow transplant with immuinosuppression therapy to put the AA patient under remission, whereas in China the frontline of treatment is herbs. With an amazing attitude, Stan continued his schooling from the very start attempting a full workload despite his conditions. The declining haemoglobin in the initial stage meant he was out of breath, and he was unable to even climb a flight of stairs for his tutorial classes on campus. Support from the AA-MDS list members was tremendous and I learnt how useful it was to have an air filter in the home after ATG.( Thanks Andrea!), I learnt about shark liver oil from Les Bannah ( Thanks !) and juicing from Marla Brown ( Thanks!). I hope this account will be useful to someone and also look forward to the day Stan will be declared cured and free from all suppression drugs.


ID: 402

Member: Greg Gathright

Email: rsigns@swbell.net

Diagnosis:

Date: April 4, 1994

Age: 44

Remission: True

Story: Just happened onto this web site and read some of the stories and thought I would share my experience with SAA I was not the type to go to the doctor for anything, however my wife and myself had started noticing bruising on me and I could not recollect how I could have gotten them, She convinced me to visit our family doctor Luckly , he had the equiptment in his office to do blood counts, when he came back he was horrified and not believing what he was seeing on the readout. He made arrangements at MD Anderson for me and insisted that I go NOW I convinced him to let me go back to work to advise my employees of my situtation , He was worried that if anything happened to me I would bleed to death before anyone could get to me, my platelets were nil. when I arrived at MD Anderson I was administered a blood transfusion and advised how critical the situtation was I still didnt realize how close I was to losing my life. Last I had heard I still held the record there for lowest blood count and still walking After four days of test , the staff determined that I had SAA and set up a protocal of 3 days of extreme chemo and BMT, luckly , I had a sibling (my brother) who was a perfect match. after 28 days in isolation and extreme sickness my bone marrow started producing healthy cells again. another 2 weeks in the hospital I was released to go home. I had to go back daily for iv’s , my wife (bless her) would give me growth hormone shots daily , blood work daily, and on and on . after 5 years MD Anderson released me as fully cured and now after 8 years my blood count is as normal as can be ( yes, I do have it checked yearly) ……… On a side note , my wife was 81/2 months pregnate when I was admitted and gave birth one day before I was released from the hospital, I was able to go to the hospital the day after our daughters birth to see her MD Anderson had advised me that from the heavy doses of chemo I had received that I would be sterile ….well …….. we now have a two and a half old daughter and MD Andrson said that I was only the second one that they know of not being sterile after the doese I had received….. we call her God’s gift. I hope someone will find hope in my story in that they will be a fortunate as I was, stay strong , don’t lose faith, best of luck to all


ID: 403

Member: EDDIE NELSON

Email: EDWARDENELSON@YAHOO.COM

Diagnosis:

Date: MARCH 2002

Age: 32

Remission: False

Story: WENT TO THE DOCTORS SHORT OF BREATH HAVING BECOME INCREASINGLY UNWELL OVER A PERIOD OF ABOUT A MONTH. DIAGNOSED AA IN HONG KONG THEN RETURNED TO UK FOR TREATMENT. HAD ATG AND I’M ON CYCLO AND LOTS OF PREDNISOLONE AND OTHER TABLETS AS I WRITE NEUTROPHILS AT .93, SO THEY LET ME HOME THOUGH GO BACK EVERY OTHER DAY FOR CHECK UPS AND TOP UPS. WOULD LIKE TO SPEAK WITH OTHER PERSONS WHO HAVE HAD ATG AND WATCHED THEIR COUNTS. EDDIE


ID: 404

Member: percilla ann clarke

Email: percillac29@yahoo.com

Diagnosis: My twin sister died from aplastic anaemia

Date:

Age: 30

Remission: False

Story: My twin sister ,Patricia was diagnosed with Aplastic anaemia in september of 1993 in Nassau Bahamas and the hospital gave her steroids and she had to be airlifted to cedars hospital in florida .She was sent to florida too late because at first the doctors could not diagnose what she had . Dr.Cohen at Cedars sent her to the National Institute of Health ,where they found out that the steroids gave her ulcers on her large and small intestines and they operated and tried to remove them but was not successful in doing so . Her organs had already stopped functioning normally .Sad to say she died on December 11th 1993.at the National Institutes of Health


ID: 405

Member: Chen Rongluan

Email: gaochenb@online.sh.cn

Diagnosis:

Date: July 13 2001

Age: 38

Remission: False

Story: I was diagnosed with aplastic anemia last July. I am Chinese. I took chinese medcine now. But there is no good result now.


ID: 406

Member: george mukombe

Email: tbongi@hotmail.com

Diagnosis: SAA APRIL 2002

Date: 20/04/2002

Age: 20

Remission: False

Story: I started of with fatigue collapsed one day was taken to hospital it was discovered tha my HB was 4.0 i was transfused wit h 4 units packed cells i went up just a little bit.Dr decided to do a bone marrow aspirate that is when i was diagnosed as having aplastic anemia not on any specific treatment on tranfusion for the 2nd time now,im begin to lose hope now considering the country where i am that is Zimbabwe i just don’t see any light at the end of the tunnel,im so scared of all these transfusions i just don’t know how safe they are.The past month has been the darkest moments of my life i feel i have nothing to live for.Just when i thought this is the beggining of my life it looks like its just about to come to an end.All i’m hoping for is a miracle.Please mail me with info that may be of help or any advise you might have for me will be greatly appreciated


ID: 407

Member: Jerome Thomas

Email: jerome.thomas@att.net

Diagnosis:

Date: 03/02

Age: 40

Remission: False

Story: Hi, I am registering to get info for my wife. She was diagnosed with AA in March. She is schedulde to sart ATG treatment soon. She has 4 siblings who were tested as possible Morrow Donors…..none were a match. She is not hadling this well and I would like to get as much info as possible, I’m feeling rather helpless at this point. Jerome Thomas


ID: 408

Member: Alison Plumley

Email: alisonza@ages.com

Diagnosis:

Date: 1980

Age: 27

Remission: False

Story: I have dealing with Chronic AA as long as I can remember. I have never been treated Doctors never thought my body could handle any kind of treatment. I am a rare case with having Chronic AA. Now my blood count is so low from my normal blood count. Doctors are really not sure on what to do because I have dealt with AA for all my life. What I really want is not to feel so tried anymore.


ID: 409

Member: marilyn thomas

Email: marilynthomas@att.net

Diagnosis:

Date: march 2002

Age: 40

Remission: False

Story: In November 2001 I got sick and hand a blood transfusion. Then in March 2002 my doctor did a bone marrow biopsy and I had 2 more blood transfusions.Then in April I had 1 blood transfusion and was diagnosed with aplastic anemia.In May 2002 I had to have 2 more blood transfusions and my doctor said she thinks I may have lupus so I will be admitted into the hospital for the ATG therapy.I have tried the procrit therapy but it did not increase my red blood cells like my docter thougt it would.My doctor started me out with 30mg,40mg and 50mg of procrit and my hemoglobin never went higher than 9.2 instead it started to drop.


ID: 410

Member: Sharon Alesky

Email: cpd5978@msn.com

Diagnosis:

Date: Nov. 2001

Age: 26

Remission: False

Story: In September 2001, I started getting extreme headaches, fatigue, bruises, etc… At first, I thought I was out of shape and had been leading an unhealthy lifestyle for too long, but after a while of no change, I finally went to my primary physician. He ordered a blood test, and a few hours later called to tell me to go to the emergency room. Immediately, I was given platelet and RBC transfusions. Since then, I have been receiving platelets every 7 days, and RBC every 3 weeks or so. I received ATG in January 2001, but had no reponse. I am trying it a second time starting June 3. Hopefully, there will be results!!! In the meantime, I am trying to eat healthy, and when I am feeling OK, to take walks and get some fresh air. I am not the type of person to just sit around and let this disease take over my life!! I would love to chat with others who are in the same situation or even those who have gone into remission!!! Thanks and hope to talk to you soon!!


ID: 411

Member: Alec Ninker

Email: montroy4@yahoo.com

Diagnosis:

Date: 5/22/02

Age: 5

Remission: False

Story: I am Alec’s mom, Gina. Alec was just diagnosised on 5/22/02. This is all so very new to us and we are trying to get as much info. as we possibly can. He is now taking Neuprogen once a day & Orapred until the HLA results come back from his dad & I. He’s had a RBC & platelet transfusion on 5/26 & 5/27. Friday 5/31 we go for another CBC to see if he needs another tranfusion. We still have a long road ahead of us!!


ID: 412

Member: DANA PILARSKI/ MOMOF JEREMY

Email: DANAFAITH26@AOL.COM

Diagnosis:

Date: SEPTEMBER 13 1996

Age: 17

Remission: False

Story: JEREMY HAD NO IDEA THAT HE WAS EVEN SICK! HE WAS THE CAPTIAN OF HIS BASKETBALL AND GOLF TEAN. HE GOT UP THE MORNING OF SEP. 13 AND HAD A VERY BAD NOSE BLEED. RUSHED HIM TO THE DR. WERE THAY GOT THE BLEEDING TO STOP, DID A BONE MARROW ASSPERATION, AND THERE IT WAS.. SAA. THAY TRYED EVRY-THING THAT THAY COULD. NOTHING SEAMED TO WORKED.PCCKED RED BLOOB, AND PLATLETS EVERY DAY. NOTHING WORKED.. I AM SO SORRYTO SAY THAT MY SON WENT HOME TO BE WITH JESUS ON NOVEMBER 25, 1996. HE WAS ONLY 17 YEARS OLD.


ID: 413

Member: Anna Tovar

Email: atovar@cox.net

Diagnosis:

Date: 8/3/01

Age: 27

Remission: True

Story: Hi my name is Anna. I was diagnosed with SAA in August of 2001. My brother was my life saver who provided me with a bone marrow transplant in Sept. 2001. I would love to talk with others with AA so please feel free to email me at atovar@cox.net. Thank you and keep the faith!


ID: 414

Member: Sonja Wootton

Email: Lbarch@earthlink.net

Diagnosis:

Date: Dec.1999

Age: 50

Remission: False

Story: Was Diagnosised a few yrs ago. My brother died at the age of 36 at UCLA with SAA. he underwent a bone marrow transplant. No idea where the both of us contacted this. I am not a candiate for bone marrow transplant or ATG. Tried Cyclosporin but made me sick. Right now not on any treatment but am recv. red cells every 4 wks. Have received about 20 transfusions in 2 1/2 yrs Had Deferal w/transf about 4 times, but had reaction, so stopped last two transf.Currently plateletts 20, white 2.5, red at transf time is 10 & 28. I have trouble breathing when red gets to 10 & 28.


ID: 415

Member: Cam Nelson

Email: pukygosh@aol.com

Diagnosis:

Date: March 2002

Age: 30

Remission: False

Story: Cam is a Merchant Marine. Early February of this year he was told he had Hepatitis A, which they think he somehow got off his ship. By mid February he was severely jaundiced , his bilirubin was 33 and his CBC’s as the ER nurse told us were “wacked” Cam was transfered from one hospital to the next, each one giving us a more scary word or words…liver transplant, bone marrow bio,Hepatitis G (which is what they say caused the AA) and finally Severe Aplastic Anemia. For the most part his liver is fine, we have to be careful what meds. he gets as we all know most of them are processed by the liver. Cam was in the BMT unit at the University of Michigan. There he had the horse serum for 4 days, went pretty good, only reacted to it the first day with a really cool rash (he was already yellow, so the rash was assorted shades of yellow instead of red) After the 4 days he spiked a fever and had a rough week. 2 weeks afterward he was released. As of today, 12 June, 2002 we feel very lucky and are in good spirits. Last friday he went for a check-up…looks like he is getting his neutrophils back…he had none and now they are 0.3, his Doc was pleased (come on people, it’s the small and I mean small victories that count) The Doc also took him down to 2x’s a week CBC’c instead of 3. He has had transfusions of either blood or platelets every week since his release from U of M,and that seems to be slowing down. We try not to dwell too much on his counts…one of us usually asks but then it is forgotten. We would rather not ride the roller coaster.We can usually tell when his platelets are getting low (his teeth bleed) and when he starts getting really tired or crabby we know it’s time for blood. AlthoughI know his white count is 0.5,I watch this one like a hawk as we have 2 boys, 8 and 6, fart funny and I get out the thermoter.When Cam first came home from michigan the boys had to live with my parents for 2 weeks (they had colds) , but they have been home and with us ever since. I am amazed by my husband and his abilities, the man can will his temp to go down, he is a hero to my boys and I. He has gotten down in the dumps and we get confused sometimes by what all is going on (we refer to our hospital as “Mt. Olympus” (very long story) but thru it all he keeps a smile on his face. We both feel very lucky. Cam’s job (he works on the lake freightors on the great lakes) takes him away from home for 2 months at a time so now we are able to spend time together (like I said, it’s the little things) I am just very happy to have found this…..it’s great. I have a whole list of questions to ask and things to tell my husband. The belief that everything happens for a reason keeps us going.


ID: 416

Member: Justin Siegen

Email: buford1@earthlink.net

Diagnosis:

Date: 5/8/02

Age: 15

Remission: False

Story: Was diagnoised on May 8 after taking to doctor who ran blood test. Blook counts very low. Had 14 day treatment of ATG with cyclosporin and is still on 300 miligrams a day. Broke out in mouth sores so was in hospital for a total of 5 weeks. Has no energy and will hardly eat. Doctors are very optimistic that he will recover. Say 80% chance. Help. Do you know anything about the mouth sore outbreak. Is that normal.


ID: 417

Member: Michelle

Email: stopsem@texas.net

Diagnosis:

Date:

Age: 19

Remission: False

Story: Michelle, my daughter was diagnosed with thyroid cancer at the age of 16 , it was removed and then blood disease’s started to manifest. During thyroid testing it was revealed that she was pregnant, we had a male grandson. At 19 she got married, and became pregnant. This pregnancy became problematic at 28 weeks when her red blood cell count dropped low enough to have a transfusion. At 34 weeks her platelet count dropped to 7,000 she was hospitalized for platelet transfusions, 3 units were given so that a C-Section could retrieve the baby, a healthy boy. It was hoped that the reduced stress would remedy the blood disorder, however 14 days later her platelet count has dropped again to 11,000. She is taking 30 mg prednisone, B12, Folic , synthroid, with no change to the low red blood cell count or platelet count. Any Ideas? She had a very proactive Doctor who has exhausted all avenues like bone marrow testing for Lukemia and genetic chromosone abnormalities. Help Dad (David Marchiori) Cross Posted Her and Forum from Guests by Bruce on 6/16/02


ID: 418

Member: Jeremy

Email: DANAFAITH26@AOL.COM

Diagnosis:

Date: 9/13/96

Age:

Remission: False

Story: MY SON JEREMY WAS DIEGNOISED ON SEP. 13, 1996. THE DR. TRYED EVERY-THING, AND I MEAN EVERY-THING. JEREMY NEVER GOT BETTER. HE WAS SEAVER FROM THE START. HE DID NOT KNOW THAT HE WAS SICK. HIS COUNT’S WERE SO BAD (EX. WHITE COUNT 0.7 WAS THE HIGHTEST) NOTHING THAY DID SEAMED TO HELP.. HE JUST GOT SICKER. HE COULD NOT EVEN HVE A BONE MARROW TRANSPLANT. JEREMY WAS 17 WHEN HE PASED AWAY. IT WAS NOV. 25, 1996. I NOW HAVE A GOLF OUTTINGEVERY YEAR TO RAISE MONEY FOR REASEARCH AND AWERENESS.. THIS IS OUR 5th YEAR. ALL I CAN DO NOW IS TO TRY AND HELP OTHER’S WITH THIS DIEASE.. THANK-YOU FOR LISENING, DANA PILARSKI JEREMY’S MOM Cross Posted by Bruce from Guests


ID: 419

Member: Jack Louie

Email: jacklouie20@yahoo.com

Diagnosis: 6 mths post ATG

Date: 6/14

Age: 32

Remission: False

Story: Diagnosed AA in 02. Did ATG + cyclo with mild response. Transfusion free for about a year and a half but counts started dropping again. Tests showed there had been some changes in my cytogenetics testing which pointed towards Mylodysplasia. September 2004 received a unrelated 9/10 BMT. Took awhile for engraftment but I am on day 52 post transplant now. WBC are normal, ANC is normal, platelets are around 160K. My hemo is slower to respond as of yet but I am getting by without transfusions. This is just the beginning of this path and it is a long road, I just feel fortunate I was given a chance from a total stranger to make this type of decision. (of getting a BMT).


ID: 420

Member: Kathleen Davis

Email: kathleen912@yahoo.com

Diagnosis:

Date: Sept 2001

Age: 32

Remission: False

Story: Think it really began Jan 2001 if not sooner. Had been experiencing tiredness and shortness of breath for many months. The mood swings were unbelieveable. From March 2001 to June 2001 was ill with virus of various kinds 4 times. Than I noticed the bruising. Went to the GP, first CBC scan was taken, Hemoglobin 11, PCV 31, White 5.3, platelets 89. Was referred to Hemotologists Aug 2001, 1 bone marrow biopsy with referred doctor than sent to Standford for 2nd opinion, 2nd bone marrow biopsy. Concluded Aplastic Anemia. 9/12/01 Anniversay had 2 units of blood, counts were Hemoglobin 9, PCV 27, white 3, platlets 62. After the transfusion was put onto 40,000 units of Procrit a week. The Procrite keeps me in the low 30s and teens for red bloods cells but platelets keep dropping. I’m in the 30K range now, no transfusions yet. Whites go from 2 to 4 but never higher anymore. In March Procrite was increased to 60,000 units a week as I was starting to fall off again with red blood cells. Also had a 3rd bone marrow to see how things looked and to make sure no change in cell shape. So I’m just hanging in there, hoping.


ID: 421

Member: Tim Woods

Email: tjwoods9999@aol.com

Diagnosis:

Date: 04/98

Age: 52

Remission: True

Story: confirmed in 4/98, was receiving blood and platlets infusions 3-4 weekly at first. went to scripps in la jolla, ca, dr. james mason, a most excellent staff and caring center. first treatment was high dose chemo, wiping out my marrow down to the stem cell, took 65 days to obtain a .03 white count…lost one lung and other complications. but, it didnt work, was still getting 3-4 infusions weekly. then atg in 2000, i took the treatment well with no visual side effects. my red and white are doing great and havent had a blood transfusion for 2 years except when i had my hip replaced because of steriods. but, i’m lucky if my platlet count is 15,000 in any one week, so i’m still getting 2 bags weekly of them. have medically retired, applied to va for disability, still havent heard, moved to a more rural enviroment and feel this has “mentally” help. lots more, but i’m sure you’ve heard it all. tim woods


ID: 422

Member: Sonja

Email: lbarch@earthlink.net

Diagnosis: SAA dec 99 High Iron Severe Reactions

Date:

Age: 50

Remission: False

Story: Hi Bruce, You don’t know me yet. I am new to your site. This site has helped me so much. I have SAA, DX 12/99. I am 50 yrs old and in good health. I am still working full time, but am in the middle of training someone for my job as I write this. My employer understands I will not be working too much longer. After first being DX, I was put on Cyclosporin and Procrait shots for about one year. My transf, (red cells) were 10 weeks apart. I developed a reaction to the Cyclo and Procrait and now my transfusions are 4 weeks apart. I am only on B12 shots and have had maybe 5 IV’s (w/trans) of Deferal. I took myself off of Deferal for the last 3 transf as I developed ringing in my ears and a weird cough. Now both are gone. My Iron Overload is at 2000. I know this is very high and will be going in next week for another transfusion which I will get with the deferral. So far my veins are still in good shape. When I was first DX my platelets were staying in the high 30’s. Now they are right at 20, sometimes lower. At 16 I had my first platelet transf a few months ago. This is my life now Bruce: For the first 2 1/2 weeks after a transfusion I feel great. After that I start feeling more and more tired each day. My breathing becomes more difficult, My heart goes crazy, (arrhythmia?). By week 4, I cannot barely get out of bed, and am very weak. Need oxygen. This breathing thing is getting worse each transfusion. My Dr. told me last week it could be the iron overload damaging my lungs, (This was not good news). My White count stays around 2.5, and at the time of transfusions my red counts fall to 9/27 or 10/28. Fifteen years ago my brother, (at the age of 36) died of SAA at UCLA hospital, following a BMT. I know a lot has improved and changed in 15 yrs with this procedure, but I watched my brother suffer so much. I will not even consider this as an option. My Dr. know how high I value a good quality of life. We have discussed ATG, and my Dr. sent me to UCLA for an opinion on ATG. They want me admitted for the procedure. However, my Dr., (Dr. T), and I have both realized that I have acute reactions to everything, and he truly feels I will not survive the ATG. I agree. So at this point, I just Thank God for the good life I have. For the 2 1/2 weeks I have very month. I have 3 grown Sons and two Grandtrs who live near by. We are very close and spend a lot of time together. My Fiancé and I have lived together for 9 years and I could not be happier. I ask the same questions you do, Bruce: How much time do I have left? I asked my Dr. after he gave me the bad news of the last Bone Marrow Biopsy last month, (disease is processing rapidly/cellular count way down), Where I would be 5 yrs from now and he could not answer that question. Bruce do you get the shortness of breath when your counts get low? By the way, I live in Long Beach, Calif. We are going to beat this Bruce. I just know we are. You are on top of everything and are making excellent decisions. Did you go thru the new treatment in April? how are you feeling now? Bye for now, Sonja


ID: 423

Member: Doretha

Email: Doretha Morton [dmorton@bpsinet.com]

Diagnosis: Winning the Battle

Date:

Age:

Remission: False

Story: Hi, Bruce, I just wanted to email you and let you know how great your website is. I just stumbled onto it a couple of months ago and wrote you then. Since then I have read everything on it and just wish you’d been there when I was diagnosed–and had never heard of it and was not able to talk to anyone about it. I did email you earlier ad gave you my story. I hope it helps someone. I have heard from a couple of people since. I check it every morning just to read something new, and I’ll admit the last few weeks when you didn’t post regularly I was concerned for your health. Don’t scare me like that. AT least say hi or something so we’ll know you’re ok. I just finished my lst year back to work–I was off 2 years, went back in the fall and we got out Friday. Not too bad a year, but it was exhausting. I go to the doctor next Monday, haven’t seen him since Feb. but I’ve gotten weekly blood tests. Hg, 11, platelets, 140, RBC 4.2, hematocrits 34. Not bad, huh?—compared to 2 years ago. Again, thanks for all the work you’ve done on the site. Hang in there. Doretha Posated from an Email – Congratulations to Doretha!


ID: 424

Member: Mugiri Zakaria

Email: indragiri@boleh.com

Diagnosis:

Date: may 2002

Age: 66

Remission: False

Story: today (june 21, 2002) result for trombcite 41.000, leucosite 4500, Hb 10,


ID: 425

Member: Julie Baxter

Email: julesisland@yahoo.co.uk

Diagnosis:

Date: NOT APPLICABLE

Age: 22

Remission: False

Story: My Gran died about ten years ago of the disease and I decided to find out more about as it is as i understand a potentially hereditery illness. I am sad to say that my gran was only 63 when we lost her and suffered terribly with bouts of septicaemia and frequent blood transfusions. I would like to know more about the risk to myself, my mother, my auntie and any future children that i may have. I am really pleased to have discovered that there are websites on this sort of thing.


ID: 426

Member: Heidi Heacock

Email:

Diagnosis:

Date:

Age:

Remission: False

Story: Diagnosed after sophomore year in high school. Took one yeare off. Had a bone marrow transplant from brother. Recovering now. Going back to school next year!


ID: 427

Member: Caitlyn Langley

Email: amylangley@attbi.com

Diagnosis: SAA Oct 2001 1X ATG-Partial response

Date: 10/13/01

Age: 6

Remission: False

Story: My name is Amy and my daughter Caitlyn was 5 on 10/13/01 when she was diagnosed with SAA. She was given ATG and cyclosporine and as of 6/02 she has had only a partial response with many side effects. She is a real trooper with all the medicines and side effects that she has had. We may be doing a 2nd ATG or continue playing the waiting game. Her only complaint is that she missed Halloween and her birthday because she was in the hospital. AA is not for wimps… It takes the strongest people (patients and family) to deal with this monster. We are very lucky to have strong friends and family to help us get through. Thank you to everyone for sharing your story. You all are my heroes!


ID: 428

Member: Becky

Email: beck_dixon@yahoo.com

Diagnosis: AA Diagnosis Changed to Myelofibrosis

Date: 10/22/2001

Age: 42

Remission: False

Story: In September 2001, I experienced fatigue. Hemaglobin was 4.9. Transfused and sent to specialist for bone marrow test. Only had problems with red blood cell production, but marrow was shut down completely in that regard. Diagnosis: pure red cell aplasia and possible myelofibrosis. Needed transfusions every 3 weeks for 3 months. Steroids had no effect. Cyclosporine apparently had some effect: transfusion time was extended to 45 days. Doctor administered experimental drug (experimental in the sense that it is not typically used to treat AA): Rituximab. Transfusion time extended to 3 months and hemaglobin slowly climbing to 11.2. Then during a two week period between 6/7/2002 and 6/21/2002, hemaglobin levels dropped suddenly back to 8, I needed a transfusion, was informed that I was now diagnosed with aplastic anemia since WBC and platlets were low (they never had been before), and ferritin indicated iron overload from the transfusions and I would soon be undergoing chelation therapy. I thought I was finally getting well. We are doing another round of Rituximab and then on to ATG in a few months. Update: Another round of Rituximab in June with no results. Bone marrow biopsy indicates myelofibrosis has progressed. Diagnois now changed to myelofibrosis and plans for ATG cancelled. Stem cell transplant scheduled for 10/30/2002. Matched sibling. Update January 2003: I am at day 78 post transplant. I had no problems during the transplant, that is, no infections bacterial, fungal, viral, or otherwise, no liver problems, etc. None of the bad stuff that can happen. I have no problems since returning home either. I visit clinic twice a week for CBCs and still have issues with my counts. My platelets are 97,000 (which is great), but white cells and red cells just won’t get in the normal range. I am told it take longer due to the myelofibrosis and try to be patient. I have much to be thankful for.


ID: 429

Member: Pat Porter

Email: Kumataro99@earthlink.net

Diagnosis:

Date:

Age:

Remission: False

Story: I am the older sister of someone who was diagnosed with this at birth but when she was 6months old it went into remission. It didnt come back until she was 18 or so and then it came and went several times with years in between sometimes until about 4 yrs ago and now it seems like it is here to stay. She is now 43 and I am 56.


ID: 430

Member: BETHANY

Email: haeseb01@uwosh.edu

Diagnosis:

Date: 1985

Age: 22

Remission: True

Story: Hello-my name is Beth and this is my story. When I was in kindegarten, way back in 1985,I would often come home from school with a new bruise. At first it wasn’t to alarming, but as they turned up in stranger and stranger places my mom would question where they were from. Some were on my back and my mom would ask if I had been kicked that day in recess, and I would reply “no”. This scared my mother and she took me in for a check-up. On the day that she took me, my normal doctor was not available so I was assigned to a new and wonderful pediatrician named Dr. Rajpal. He believed my mom that there was something horribly wrong happening to me and agreed to run several unusual tests. The lab tech even questioned why my doctor had ordered them. However, even before all of the test results were back, they discovered that I was in grave danger. I believe directly from the pediatrics clinic I was sent to the local hospital for a bone marrow aspiration. Hoping to find that I had leukemia, they were shocked to discover that it was aplastic anemia. I was five years old. Most of it remains a cloudy memory for me, because I was so young, but I do remember bits and pieces. I stayed awhile in the local hospital, in fact I was there for Saint Nick’s and recieved my stocking on an IV pole. Although I know I was home for my birthday (Dec. 23) and Christmas. Some time after that I was sent down to Children’s Hospital of Milwaukee, here in Wisconsin. I am told that I was very lucky to live in WI because at that time it was only one of two areas (Boston being the other) that was trained to handle bone marrow transplants! However, the hospital was about an hour and a half away from my home town, so it was very challenging for my parents to handle work, my brothers and sister, and being with me. Anyway, I was placed in an isolation room that was stark white. I remember I had a TV and hung the many cards and pictures sent to me from friends and family as well as my kindegarten classmates. I also had my munch-chee-chee (a stuffed monkey) that wore an “I LOVE YOU BETH” shirt. I remember being very angry when I dropped it on the floor and it had to be sanitized. The only people allowed into my room were my doctors and the three nurses assigned to me as well as my parents and grandparents. My brothers and sisters had to visit it with me through a glass window with what looked like chicken wire on it. My relatives also talked to me through this as did Adam, the little boy whose room was next to mine. He had leukemia and was sent to Disney Land by the Make- a-wish foundation. His family and mine were very close, however he unfortunatly died a week or so after his trip- to this day I still have a teddy bear that he had given me as a thank you for the big red fire engine we once gave him. Anyways, throughout my hospital stay I recieved several treatments of chemo, which made me very weak. They also caused my hair to fall out, which I blamed on the nurses when the washed my hair. I would yell at them to quit pulling it out. Eventually my dad shaved it off, my mom couldn’t bear to do it. I guess I had a couple of strands though that I would comb and thought looked very cool with my sunglasses. As the chemo depleted my immune system, my oldest brother Jeremy prepared to be my donor, he was ten and an exact match. On February 14th, yes St. Valentine’s Day, I had my bone marrow transplant. It was a success! The nurses said that the coolest thing happened, the blood that seeped through my brother’s gauze was in the obvious shape of a heart and that they outlined it with marker! How strange! Also, I have been told that there was a prayer chain goin on for me throughout the world, with nuns in England even praying for me and I was told that I was something like the sixth successful transplant, I don’t know if that means around the world or just at Milwaukee Children’s, but who cares it worked. As I grew stronger, a little 4 year old Korean girl moved into what was once Adam’s room. Her name was Caitlin Raymond. Some of you may now her through the International Registry set up in her name in Massachuesets. She was a lovely girl who would often visit with me and write about me in her diary. We would often play together. Anyway, eventually I was finally well enough to leave the hospital, after many months. We stayed with my mother’s cousin’s in Milwaukee, until my check-ups were far enough apart that I could finally go home. Caitlin I heard was moved into my room for goodluck, but she also passed away because she could not find a donor. Also at home we had to give away or wonderful dog, which was very sad. I also had to were a protective mask and couldn’t play outdoors with my siblings, which was awful. Furthermore, I had to have a tutor come and bring me up-to-date, because the school had too many kids with too many germs. Her name was Nancy, but I liked to call her Nancy Reagan. Anyway, I eventually got better, my hair grew back, and I returned to school. Now I am twenty-two years old and healthy. I have suffered some hearing loss, which my parents and I believe is ototoxicity from the medications I was given. I also bear my hickman scars which people continually ask about. My life is good. I have a gorgeous boyfriend who I have been dating a year and a half, I have wonderful friends, a great family, two so-so jobs, and I attend the University of Wisconsin Oshkosh. It is my senior year and I have one semester left. My goal is to become an excellent pediatric nurse. If you wish to ever write me, my e-mail is haeseb01@uwosh.edu I would be happy to hear from you.


ID: 431

Member: Taylor Anne

Email: Tam2tam@aol.com

Diagnosis: bmt 06jun02 1/23/03 great

Date: 04/16/02

Age: 10

Remission: False

Story: Taylor was diagnosed the day before her 10th birthday with AA. We were thrilled that it wasn’t leukemia until I started doing research and LISTENING to the drs. We went thru a rough two week period waiting for HLA typing to be done. She has only one brother (age 8) so we knew the odds were against us! We finally got a phone call. Nick was a match(he had told the doctors he would be when they drew blood?). We entered the hospital 29may. Had 2 broviac catheters placed on 30may. She received a round of IVIg 31may. Started 4 days of cytoxan and ATG. She tolerated all of that extremely well. BMT was done on the 6th(she considers that to be her 2nd birthdate). We left the hospital on 29jun. Her ANC was up to 910, platelets at 78k, WBC at 1.4. We were scheduled to go back 01jul for day treatment. She receives IVIg every two weeks. Her counts on Monday were unreal! Her ANC was up to 1040, platelets at 98k. She had one catheter removed before we came home. She also had two units of blood before she left the hospital. Her Hgb had dropped to 7.7. She seems to be an amazing little girl. I would not let her have any times to whine. She saw that there were plenty of other kids who were in worse shape than she was. I think she was trying to send her strong will their direction?! We had the BMT done at Childrens Hospital Columbus, Ohio. They have an awesome staff there. There was NEVER any question of whether they were doing the right thing for Taylor. She knew it too. She asked millions of questions and they took the time to answer them..detailed answers. We go back again tomorrow 7/08/02…will update at that time. I am by no means an expert..but would be willing to talk to anyone about our journey! Trip to hospital was great…her ANC was up to 1755..WBC 2.7…RBC 3.67…Hgb low at 10.8 will keep an eye on that one but her platelets were 161k..I know lots of people don’t go for BMT. It has helped Taylor immensely. We do know the scared stiff feeling beforehand also! Hoping no relapse down the road..can cross that when and if it happens?! Trip to hospital was great again..ANC is up to 3410..WBC 5.5(whew!) RBC 3.38 Hgb low at 9.8..will watch that one…platelets jumped to 225K. Yippee..Dr wants to wait to give transfusion…she doesn’t want her bone marrow to stop with the forward momentum?! Received IVIg today also…tolerated that well! Will update on next trip..next monday…god bless! It’s now almost 120 days post transplant..everything seems to be going well. Taylor is trying to get back into school by January. Her counts are slowly but surely improving. She is looking forward to being off the low bacterial diet. Oct 3 she may eat fresh fruits and vegetables..She can’t wait!


ID: 432

Member: Jesse

Email: cierarosey@cs.com

Diagnosis:

Date: 2/4/1994

Age: 18

Remission: False

Story: My son Jesse has been on a roller coaster since DX 1994. He was 10. He would be up and then down and when we were ready to start search for BMT his Blood counts would come up on there own. Over the last two years they have not came up and now he has PNH. He is secheduled for BMT in August. He has had a long road but is a trooper.He only wants to feel good enough to play Basketball. He’s 6’3″ and ready to get back on the court


ID: 433

Member: Tim Smith

Email: bamasmith@bluegrass.net

Diagnosis:

Date: 04/02

Age: 38

Remission: False

Story: I am an active duty soldier in the US Army. Due to my job, I am in good physical shape and was surprised when I started becoming short of breath when running. In April I was diagnosed with Severe AA. My counts were all so low, the doctors were shocked that I was walking around. I underwent ATG treatment in May 2002 and I am showing improvement in my counts (Platelets are up from 2 to 83 with no transfusions). Update as of 12 June 2003–well I can’t complain, cause I doing well. My last counts were RBC-3.9, WBC-4.2, Platelets-71, HBG-14.5. Two weeks ago I had normal counts believe or not. I went for my follow up and they had dropped. The doc said I either had a viral infection or a relasp. Praying for the infections. I’m being medical discharged(temporarily) from the Army after 13 yrs. I tried every route to stay in, but since my platelets are low, I can’t be deployed. I still take meds(cyclo,haletestin)x2 daily. Is anyone having side effects even after 14mths? I wish you all nothing but the best!


ID: 434

Member: ALYSON CASHWELL

Email: ALYCASHWELL@AOL.COM

Diagnosis:

Date: 1997

Age: 38

Remission: False

Story: Although I’ve had AA sinse 1997, I’ve tolerated it fairly well..until last year or so. I’ve had about 5 transfusions, and was on Cyclosporin when dx’d, and have been on steroids sinse 1993 when dx’d with Lupus. Is the disease worse than the treatment ? I guess we all have the same worries, long time steroid use has me really concerned that I will suffer bone loss ( so many people on this site have hip-replacements ) don’t think I can use them any more so I’m finally off them. I am sheduled to go in for ATG / CYCLO next week ~ I’m going back and forward with this ~ should I or should’nt I ? The more I read about the Immunosuppressive treatment, the more I worry. ( mainly about clonal cancers, disease progression ~ I may already have progressed to PNH ) Anyone who has any advise about whether to take the ATG ? I will talk to a doctor again on Wed ( 17th July 02 ) see if I can get some answers, so far it’s a case of yes, they think it’s worth the risk but they think I need to take drastic measures and I don’t ! Anyway, it’s a comfort to read everyone’s stories and I am thankful to you all. Indeed we read to know that we are not alone ! ( shadowlands ) Also, I have been evaluated at the Seattle Cancer Care Center for a BMT ~ my brother was not a match, still not sure that I could go through with one, even if they did find a match, especially because of my age ( 38 ) Thanks for listening, best of luck to you all !


ID: 435

Member: Thomas Finley

Email: Matbeth@adelphia.net

Diagnosis:

Date: 06/21/02

Age: 55

Remission: False

Story: Mother had lupus. Was short of breath, extremely weak, waxy color. Went to veterans hospital in St. Louis, MO. Doctor performed bone marrow biopsy. RBC’s decreased. Diagnosed with aplastic anemia. Currently undergoing immunosuppressant therapy.


ID: 436

Member: Sonja Wootton

Email:

Diagnosis:

Date: Dec. 1999

Age: 50

Remission: False

Story: I was on Cyclosporin and Procrait last year but had to stop due to reactions. I am now treatment free. Red cell tranfusions are every 4 weeks. Platelets are at 20 and falling. I feel great for the first 3 weeks after each transf. and then feel reallly bad and weak for about one entire week. I am thankful the the weeks I feel so good. I am not a candidate for ATG or BMT.This web site has given me so much insite!


ID: 437

Member: Joa Meade

Email: JMeade8038@adelphia.net

Diagnosis:

Date: 5/01

Age: 66

Remission: True

Story: I was dx with MDS after a routine blood test. At this time I am just being monitored at Roswell Park in Buffalo NY. This is a center of Excellence. I want to know as much as I possibly can about this disease.


ID: 438

Member: Christina

Email: hgchen@msn.com

Diagnosis: DX SAA 01/24/02 ATG Good Response

Date: 1/24/02

Age: 10

Remission: True

Story: Diagnosed SAA on 1/24/02 at age 9 due to petechiae on legs. CBC (1/24/2002) were WBC 0.770, RBC 3.54, HGB 10.8, and PLT 3. No HLA match sibling. ATG (horse) on 2/22/02. CBC (2/22/02) were WBC 1.100, RBC 2.44, HGB 7.8, and PLT 52 (2 days post transfusion). Good Response to ATG/CSA/MMF treatment (http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_00-H-0032.html@aplastic). Three months after the treatment, CBC (5/21/02) were WBC 3.710, RBC 3.73, HGB 12.3, and PLT 222. Current CBC (7/15/02) are WBC 5.630, RBC 4.09, HGB 12.6, and PLT 219. Update: Six months after the treatment, CBC (8/20/02) are WBC 4.24, RBC 4.22, HGB 12.7, and PLT 250. Stop CSA on Sept. 7, 2002. Update: 28 months after the treatment, CBC (6/10/04) are WBC 7.67, RBC 4.81, HGB 14.5, and PLT 234. June 10-June 15, 2004, G-CSF induced stem cell mobilization and stem cell collection (http://clinicalstudies.info.nih.gov/detail/A_2001-H-0083.html)


ID: 439

Member: Halles

Email: babyblue_eyes232@hotmail.com

Diagnosis: Aplastic Anemia

Date: march 2002

Age: 16

Remission: False

Story:  I’m a 16 yr. old girl and I was diagnosed just this past March – and it was just an accidental discovery when I went in to for a CBC because I was feeling faint one day at school. At first they thought it might just be ITP because it was only my platlets that were low, they were at 37 or so. Since then my platelets have been decreasing, hitting 9 at the lowest. After a bone marrow aspiration & biopsy, they found that my bone marrow was only 15-25% making blood cells like it should be. Just a few weeks ago I recieved ATG over a period of 4 days, and took a Prednisone along with it. I’m currently taking 500 mg. of cyclo a day, Epo shots every day, & iron supplements. As I was being weaned off the Prednisone my platelets dropped really low, and I was on it a lil longer than I had hoped I would be. I’m finally finished with that, and now just have the cyclo & epo to deal with. So far, I can’t tell what my response has been, I have to wait a little while longer. My younger sister is a perfect bone marrow match. My doctor suggests that we obviously wait and see how i respond to this first dose, and then more likely than not, go with a BMT rather than another dosage of ATG. UPDATE #2 – sept.9 02′ – my platelets are now at 68, and have been on an upward trend for a month or so! my hemoglobin is normal finally, so i’m only taking the epo shots 3 days a week. still on cyclo. UPDATE #3 – nov 25, 02′ – i’m off all treatment! went from a 400 mg. of cyclo a day, to nothing. platelets in 70’s. everything else normal. red blood cells WERE enlarged, now they’re going back to normal size, which suggests a change in my bone marrow! considered in remission b/c taking no meds besides bactrim *3 days a week*


ID: 440

Member: Gur Charan Jit

Email: Rajesh_Sethi71@yahoo.com

Diagnosis:

Date: 27th July’02

Age: 60

Remission: False

Story: Mr Gurcharanjit(60 yrs, Male) is my father. A pure vegiterian, yoga instructor,a total tea-totaller had been complaining of Red bruises on his body(no bleeding ever) and also loss of stamina, increase sweating and increased tiredness since last few months.We went for cardiac check up and his blood report showed reduced Hb of 5.4 and platlet count of 25K. My father has been taking High Blood Pressure related medicines since last 25 years, otherwise leading a very active life and good health, with no health related complains.After Blood transfusions and platlet transfusions, his bone marrow biopsy revealed cellularity of less than 5%. Hence, diagnosed as AA. We have been told that he will be put on Cyclosporine soon. Please mail me the news letters regularly and any other advise.


ID: 441

Member: Rebecca Creech

Email: rxcree@yahoo.com

Diagnosis:

Date: 89/02

Age: 44

Remission: False

Story: Not sure this is what I may have; I have not been yet diagnosed. I have many of these symptoms. There is something wrong with my blood. I am producing too many white blood cells, very highly anemic. cannot get well. I am scheduled to see a hematologist as I have been very sick.


ID: 442

Member: Jessica Sobel

Email: Jazper328@aol.com

Diagnosis:

Date: August 2002

Age: 57

Remission: False

Story: Hi, My Dad was diagnosed w/ Leukemia (CLL) in May 2002. He has also had a rare disease called Gaucher’s for years. Gaucher’s is uncomfortable at times but his is not severe. He also has less than stage 1 leukemia and would be undected in his blood by a regular blood test. However, after the diagnosis he just started go down hill rapidly. He experienced black & blues for no reason, was very lethargic / weak, his blood levels went hay wire and his platelets would drob by the thousands each week. The doctors said that he was a medical mystery. Finally, they decided to test his bone marrow where they concluded that he has Antiplastic Anemia. This was the first time that we have ever heard of this rare disease. We know that it is very life threatening. He was hospitalized for 2 weeks and given the ATG treatment. The doctor says that there is a 67% success rate, but we won’t know if it worked for sure until 6 months or so. Until then he needs to go for platelet infustions, & blood transfusions. I would really like to know more about this disease and the recovery / success rate. It has dramatically changed all of our lives. Sincerely, Jessica


ID: 443

Member: Perla

Email: perlita0858@hotmail.com

Diagnosis: SAA8/00BMT10/

Date: 8/8/00

Age: 21

Remission: True

Story: My story, Kind of long but i think i can break it down, I was diagnosed with severe aplastic anemia on aug of 00, and i recieved alot of platlet transfustion and also some red blood cells, and i had also recieved shots to increse blood count,,eg.nuepogen and nuemega, and eupegon, but the were not working, within two mothes i had a bmt, donated from my sister(not identical), But the chemo and the other regimns were unsucceful to destroy my immune system fully, and my cells destroyed the newly implanted cells, but i also had a bad case of gvhd and had to wait before i could have another bmt, I was in the hosptial for 5 mos with all sort of problems, and finnaly i could be reinfused and it worked, and in 2 weeks i was realsed from the hosptial, and gradually my blood counts started to come up, and that bring me to the present day, aug of 02, and i am doing good now, i have my back to where it was before, with minor complications and minor restriction, which is great, being 21, and getting to do what young adult are to do is great, i am able to party til 4, go to school full time, and do all sort of pysical attivitys, Life is good and i am happy that i suffered, since i was able to get a better outlook on life, I would really like to hear about anyone with AA and those espically that have gone through BMT. take care all and remember to be strong and to never stop fighting.


ID: 444

Member: Vanesa

Email: krazy_serbgal@hotmail.com

Diagnosis:

Date: 28 january 2002

Age: 17

Remission: False

Story: Hey everyone !!!! 🙂 i was diagnosed with SAA in january of this year ( 2002 ), i had no idea of what the hell this stupid illness was , i had atg and was on cyclosporin for 3 months, i had too many side affects so i got off that drug i am free from n e drugs now, all the side effect were just too horrible, itchy all over, burning feet and hands, bone pain , muscle pain, headaches, my liver and kidneys were very damaged, constipation and anyother side affect there is i had. i have since then started chinese acupunture and herbal medicine and am on lots of vitamins juices have changed my diet and have not used any chemicals or anything like hair die, fake nail glue, pesticides everything. i am still having regular red blood tranfusions i usually have 2 bags of blood a week but i found that if i have 4 bags one week it lasts longer for about 3 weeks, i dont usualy have platelet tranfusions because they are usually over 10k which was better then at the start they used to be 1k , and neutophills are at 0.4 and white cells are 1.8 i am getting better i feel much better then when i am on stupid drugs i will get better like this i will be in remmission soon i can feel it i have a good feeling about this alternative treatment !!!!!!!! thanx for listening and please send me email at krazy_serbgal@hotmail.com


ID: 445

Member: myrna wall

Email: g_mwall@hotmail.com

Diagnosis: Winning with God

Date: July 1979

Age: 30

Remission: False

Story: I just want everyone to know there is always hope. I was diagnosed at age 7 along with three other girls in nearby towns. We believe my AA was caused by chemicals on the farm. I received blood transfussions when my platelets dropped below 2,000. After 4 years of in and out of hospitals with no match for a BMT, my parents were given 2 choices. Transplant my brother’s marrow which was the closest match and hope my body would try to fight it and start working on its own. The second, take me home and let me die. We went home and tried everything from Shakley vitamins (horse pills) to raw hamburger. In the end prayer was all they had left. My counts stayed around 35,000 for years. I graduated from college, worked between 2 and 4 jobs at one time and planned a wedding. I never let the disease control me. I got pregnant within weeks after my wedding, my Dr. was quite scared and overly cautious. During my pregnancies, my counts gradually drop into the teens. But slowly rise to 25-26,000 by delivery. I had a c-section with my first child and 6 bags of platelets. With my second only three bags were needed for the natural delivery. After my first child my platelets stayed around 60,000. They are now at a whopping 84,000. There is always hope. I believe that God has had me in his hands the whole time through the pain and the happiness. Please contact me if you need anything!


ID: 447

Member: M SAI KIRAN

Email: SASIDHARAN2002@REDIFFMAIL.COM

Diagnosis:

Date: JULY 2002

Age: 6

Remission: False

Story: SAI KIRAN WAS DIAGNOSED HAVING APLASTIC ANEMIA IN JULY 2002. HIS YOUNGER SIBLINGS HLA TYPING DID NOT MATCH. SAI KIRAN’S HLA TYPING IS A A B B C C DR DR DQ DQ LOCUS LOCUS LOCUS LOCUS LOCUS LOCUS OTHERS LOCUS LOCUS LOCUS LOCUS OTHERS 11 33 18 44 W7 — BW4&6 4 17 2 3 DR52&53 HIS YOUNGER SIBLINGS MASTER CHAITANYA HLA TYPING IS A A B B C C DR DR DQ DQ LOCUS LOCUS LOCUS LOCUS LOCUS LOCUS OTHERS LOCUS LOCUS LOCUS LOCUS OTHERS 2 11 18 38 W7 — BW4&6 8 17 2 — DR52 BOTH THE SIBLINGS ARE HIV NEGATIVE AND HBS AG NEGATIVE. ANY ONE WITH A POSITIVE MATCH FOR SAI KIRAN MAY KINDLY CONTACT THE FOLLOWING ADDRESS. Dr. SASI DHARAN H.NO-24-226/2 ROAD NO.5 MARUTI NAGAR COLONY TRIMULGHEERY(POST AND VILLAGE) SECUNDERABAD-500015 ANDHRA PRADESH, INDIA. PHONE NO. +91-040-7793631 SIMILARLY ANY ONE WITH A POSITIVE MATCH FOR MASTER CHAITANYA CAN ASK FOR BONE MARROW FOR TRANSPLATION. SASI DHARAN


ID: 448

Member: Bob Farabaugh

Email: cyphrbob@penn.com

Diagnosis: SAA Aug 16 02 ATG 9 15 waiting for response

Date: Aug 16, 2002

Age: 56

Remission: False

Story: Finished ATG 1 week ago 9-15. Home with Neoral, Medtrol Nepogen. WC very low, neutopenic. Platelets every 3 days at present. Just waiting for some results to begin. Otherwise feeling pretty well. It is now March 2003. I havent needed a transfusion since November. living a pretty normal life. taking Neoral and magnesium daily along with toperal-xl for hypertension.. Just finished a series of Aranesp shots. blood counts approaching normal, platelets are at 75000 though. Patience and faith will see you through. I’ll never take “normal” for granted again. I’m at 300 mg a day of Neoral. Hoping for the day when it can be discontinued. well its september 2004. About tywo years since my diagnosis. Still taking Neoral every day. I’m able to work and live a pretty normal life. Red cells still below normal, maybe they always will be. I tire out sooner than I’d like. I’m happy though, just to be home with my wife and able to work. I recall when I first saw this site, I was in hospital garb, dragging my iv pole behind me heading to the internet pc provided for patients. Had to wear a mask because of neutropenia anytime I left my room. I always had a private room because of the neutropenia. I wish you all well. I just take it as it comes now. I’ve come to realize that whatever life holds for me will be alright. Its all good in the long run.


ID: 449

Member: Susanne Leppert mother of Andrew

Email: susannel@yellowbananas.com

Diagnosis:

Date: March of 1990

Age: 13

Remission: False

Story: Andrew was diagnosed at 1 year of age when he went for his first year checkup. Thought at first it was Leukemia but after a month said it was AA. Since then 6 blood transfusions which brought up hemaglobin fair. Mainly had trouble with Platelets. No treatment until 4 months ago when he started taking Procrit 40,000ml once a week. Not much good only slight improvement. Recent counts are Hemaglobin 7.6, White 3.4, and Platelets 14,000. Doctor said he wants to wait on other treatment because Andrew is otherwise healthy. My concern and curiosity is that his father passed away in January of 1995 of Acute Myelogenous Leukemia and his paternal Grandmother passed away approximately 23 years ago with the same leukemia. I was wondering if there are other people out there with AA that have family histories such as this. I’m concerned that the AA will eventually become Leukemia. My prayers and thoughts are with you all. May God Bless Would like to know if anyone out there is taking Procrit and how it is working. On Oct. 8,2002, Andrew’s counts were hemaglobin 6.9, white count 3.5, and platelets were 13,000. Was getting blood work every two weeks but doctor wants counts again this week due to hemaglobin low.


ID: 451

Member: Toni

Email: tbaby0319@aol.com

Diagnosis:

Date: 2/02

Age: 17

Remission: False

Story: I went to my PCP for a sore throat. He did a CBC because he said I looked a little pale. My counts came back pretty low, so he referred me to a hematologist. I went to the hematologist once a week for CBC’s. The counts were usually: WBC-3.0, HGB-6.9, and PLT-80. I went to this hematologist for many months before he referred me to Georgetown University Hospital’s Lombardi Cancer Center. I went to the pediatric hematology/oncology clinic there. These doctors were amazing. After many tests, including BMB’s, I was diagnosed with SAA. My one full sister was a complete match for a bone marrow transplant. We scheduled a date for the transplant, however it was postponed the day before due to an increase in my counts. My doctors weren’t sure why my counts were going up on their own, but they were. So my doctors consulted with Dr. Neil Young at NIH and he suggested to not do the transplant and to watch my counts. I was so excited because the thought of transplant really scares me. Since then I have recieved the ATG treatment (horse). I was in the hospital’s BMT unit for 5 days while I got the ATG. It all went very smoothly and the only reaction I had to it was a few hives here and there. It has now been 5 months since the treatment, and I have had a partial response. Currently my counts are: WBC-3.1, HGB-9.0, PLT-60, ANC-1860. These counts are very good for me. I have not have a RBC transfusion in 3 months, and I have not had a PLT transfusion in 5 months. I am taking cyclosporin 2x a day, and I give myself epogen shots 3 times a week. I am ready for my disease to go away! Reading other stories from this website has really helped me. Good luck to everyone, and thank you for letting me share my story. I will keep you updated.


ID: 452

Member: Darren Bradbery

Email: darren.bradbery@talk21.com

Diagnosis:

Date: January 2002

Age: 19

Remission: False

Story: Diagnosed in January with severe A.A after feeling very fatigued and pale for approx. a month ( Although I could notice a severe decrease in stamina playing football (soccer) six months before. Treated initially with ALG (Horse serum) in addition to cyclosporin – little response over 6 months. Then treated with ATG (Rabbit) with cyclosporin similar response only given three months though. Latest course of treatment ALG in addition to GCSF injections (administered daily by myself for a three month period) and cyclosporin initial response encouraging. Latest blood count (not sure of equivalent U.S readings) HB-11, WBC- 12.67, Neutrophils- 11.08, Platelets- 15. Neutrophils have gone very high since GCSF started. Previously over the last 9 months previously they generally ranged from 0.4 to 1.5. Have not had a blood transfusion in over a month! previously needed them quite often. Am now able to do mild exertion i.e go for walks up to 5Km! Platelets still very low though I am only transfused below 10 and am not bleeding. Have not had any major infections since diagnosis. I have 6 potential matches for bone marrow transplantation which may be an option in the future. Latest as of 23/7/03 Responded to 3rd course of serum in Late September last year. Currently taking 150mg bd and GCSF every two days. Latest Counts HB-13.7, Platelets-60, WBC-2.2 and neuts 1.2. No blood transfusions in nine months. One full match should bmt be necessary. Good luck to all Darren Bradbery- Isle of Man, United Kingdom


ID: 453

Member: Adrian Johns

Email: adrian@capd.fsnet.co.uk

Diagnosis: SAA Mar 2001 2x ALG Now 4 Month Post Mini MUD

Date: 03/2001

Age: 24

Remission: False

Story: I got diagnoised in March 2001 with Severe Aplastic Anemia. I recieved 2x ALG in April and in September, starting Cyclosporin after September’s ALG. Got diagnosed with Avascular Necrosis of the Left Hip in December, I was still walking until May 2002, since may have been put in wheelchair, Can’t even walk 2 steps. Because of counts went lower was changed to Very Severe Aplastic Anemia, and the fast deteriation due to Nuetrophiles being below 0.1 and the mobility problems the unrelated bone marrow transplant was an emegency, due to steriod dammage on the hip already I was given a new Mini Transplant which was less toxic and no need for steriods and I didn’t lose my hair. I recivied the cells on 17th July 2002, the cells grafted about 2 weeks later and started to rise, since the transplant I’ve had no GVHD but my kidneys keep on going toxic with the high levels of cyclosporin needed to stop the graft from regecting at about 3 months post BMT my blood counts started to slowly come down and I have needed 5 bags of blood in the last month but my platlets have kept transfusion free they have been upto 115 and have dropped to 40 but since been on a new drug called cellcept which I am on aswell as cyclosporin they have risen upto 50 so far. My nuetrohiles went down to 0.5 but are now at about 6.0 but I am on GCSF every other day. Can’t have my hip replaced until my counts are quite alot higher and less chance of getting infections.


ID: 454

Member: Jaehoon David Jin

Email: djin84@hotmail.com

Diagnosis:

Date: 12/6/01

Age: 17

Remission: False

Story: I was diagnosed on my 17th birthday. I underwent Cytoxin at Johns HOpkins HOspital under Dr. Brodsky’s clinical chemotherapy. I responded and was released. I am in partial remission and still hoping for full remission.


ID: 455

Member: Matthew

Email: AndyJennifer@comporium.net

Diagnosis: SAA April 2002 Sibling BMT

Date: 04/05/02

Age: 3

Remission: True

Story: Matthew was diagnosed with severe Aplastic Anemia on April 5, 2002. I took him to the doctor that day because I thought he had broken his toe. Three hours later we are in the hospital and the doctors were telling us that our son either had Leukemia or Aplastic Anemia. Wow, we were in shock! I mentioned to the doctor that I was trying to figure out which one I wanted him to have because they are both horrible, and she said “you would’ve wanted him to have Leukemia.” wow, that puts it in perspective! Well, we turned out to be one of the lucky ones because our baby that we had just had turned out to be a perfect match. We were then sent to Duke University Medical Center for a bone marrow transplant. He had his transplant on May 14, 2002. We are now six months post transplant and he is doing great. Dr. Kurtzberg is the director of the pediatric BMT unit and she is wonderful. They have a terrific program there. If you would like more information about our experience or more information about who to contact at Duke University Medical Center, please feel free to contact us!


ID: 456

Member: Eddie Father of John Michael

Email: rod1667@aol.com

Diagnosis: SAA Nov 15 2002 ATG and Cyclo So far so good

Date: 11/02

Age: 10

Remission: False

Story: My only child was diagnosed with severe aplastic anemia in November of 2002. Getting treatment at Children’s Hospital in Milwaukee, (ATG) and WAITING!!!!!!!!! Had ATG/Cyclo 12/02 and so far he is responding great!!!!!!!!!!!!


ID: 457

Member: Heather Stolt

Email: hstolt@hotmail.com

Diagnosis:

Date: 05-30-02

Age: 25

Remission: False

Story: Since I have been diagnosis with SAA, I have had 14 units of blood and 30 units of platelets (since May of 2002). I went through my first ATG treatment on Oct 15-18 of 2202. I am on cyclosporine and I used to be on steroids. The cyclosporine caused me to get yellow jaudince. I was hospitalized for yellow jaudince on Nov 1-2 of 2002. I was hospitalized for my blood sugar on Nov14-22 of 2002. I was not a diabetic until the steroids caused my blood sugar to go sky high and now I have to keep an eye on my sugar level. I now have a port in my chest. Right now I am fighting shingles which is around my port area and my veins in my arms are shot to the point that they can’t get blood from them. They don’t want to use the port untill the shingles are gone. I am waiting for a unrelated bone marrow transplant. My doctor is still trying to find me a donor. Her name is Ushree Chamarthy, transplant doctor. I like to know more about that health treatment you are on. Please e-mail me or send me information to 19771 Armada Ridge Rd, Armada, MI 48005. Thanks Sincerely, Heather Stolt


ID: 459

Member: Ken Henderson

Email: kvhen@hotmail.com

Diagnosis:

Date: Nov 2002

Age: 39

Remission: True

Story: I went to Africa on a mission trip with my church in July 2002. I took Larium, a pill to prevent malaria. Three months later I developed symptoms of anemia and was diagnosed with red cell aplasia (a form of AA). My hct got down to 18 before transfusions. I was treated successfully with ATG, although I had EVERY possible side effect. I am feeling normal again and my hct is almost normal ( and rising).


ID: 460

Member: ron rozanski

Email: rroze2000@aol.com

Diagnosis:

Date: July 2002

Age: 4

Remission: False

Story:  Who is Maya? Maya is our god-daughter and niece. She is four years old and she lives with her parents in Swidnice, Poland. She loves to color, play in the park, and she adores her 7 year old cousin, Matthew. Maya and has Aplastic Anemia – a very rare blood disorder that is similar to leukemia. Since her diagnosis in July of 2002, she has had various ongoing treatments. Unfortunately, she hasn’t responded positively to any of them. Her immune system is extremely weak and she frequently battles serious bacterial and viral infections. If she missed a treatment, or suffered any kind of trauma, she could hemmorage and die very quickly. To keep her alive, she has been receiving platelet infusions on a weekly basis and blood transfusions every month. Now, Maya’s best hope is to have a life-saving bone marrow transplant (BMT). Unfortunately, Maya’s doctors told us that they have never completed a successful BMT from an unrelated donor (Maya is an only child). If bone marrow from a donor with a perfect match is used, then the chances for survival are high (70-80%). If not, then the survival rate drops considerably. Because this is such a rare disease, there aren’t many hospitals or clinics that have sufficient experience with unrelated donor BMTs. One of the most experienced and successful centers is the Barbara Karmanos Cancer Institute. For these reasons, Maya’s doctors and two physicians in the U.S. agree that Maya’s best chance for survival is to have the transplant completed in the U.S. Dr. Steven Abella of Karmanos has agreed to perform the transplant free of charge, however Children’s Hospital of Detroit will charge approximately $250,000. Raising the Funds Those expenses are not covered by insurance, so our only option is to raise the money ourselves. We tried to adopt Maya, so that our insurance coverage would apply, but the obstacles were overwhelming. Therefore, our only option, financially, is to raise the money ourselves. Through the sale of a house, we personally are contributing $70,000. Maya’s parents earn the equivalent of less than $1,000 per month, so $250,000 may seem overwhelming. Nevertheless, they are actively raising funds in Poland and they hope to raise $20,000. To help raise the balance, we partnered with a non-profit organization named “My Friends Care Bone Marrow Transplant Fund” (based in Mt. Clemens, MI). My Friends Care is exempt from federal taxes under the provisions of section 501(C)(3) of the IRS code. What Can I Do? If you can help Maya, please do. All donations are tax deductible and 100% will be used to pay for her medical expenses. Also, volunteers who are willing to donate their time, resources or funds are always welcome. On behalf of Maya, her parents, and others who care, Thank You. – – Ewa and Ron Rozanski Tax Deductible Donations can be sent to: My Friends Care BMT Fund P.O. Box 4812 Troy, MI 48099 Please write “For Maya Rembisz” on the memo line. Any amount, even just $10 or $20 will help and is greatly appreciated. You can also contact us by phone or e-mail: Home Phone (248) 828-0115 e-mail rroze2000@aol.com


ID: 461

Member: Nicholas Colella

Email: allusivewolf@aol.com

Diagnosis:

Date: january 28,2002

Age: 24

Remission: False

Story: I am a Sgt in the United States Marine Corps, apon re-enlisting my doctors found my blood counts to be abnormal. I was then evaluated further and diagnosed with SAA. I was then medivac’d out of my unit for further treatment. That was a yr ago. Today i am still struggling from day to day. I refuse to give up. Half the time i need to be reminded that i have a serious condition and i tend to forget that alot. But however i try not to let it interfere with my life. Right now i am just going to the doc’s once a month, and i have been placed back with the marines once again, although it is really frustrating knowing that i cant participate in the daily activities that i love and enjoy doing with my marines. But it is hard, i dont want to be labeled as a “slacker” or “lazy” then again they dont know my condition. I am still fighting to try to stay in the marine corps as well as become a police officer when i get out. Then again i dont know if reality has it that i will be able to preform those jobs. But i am not losing hope or quiting the day to day struggle.


ID: 464

Member: Caitlin’s Mom

Email: bmandrews@msn.com

Diagnosis:

Date: 3/99

Age: 16

Remission: True

Story: Caitlin was diagnosed with AA quite by accident. She was recovering from another “strange” disease, Autoimmune Hepatitus, when a lab test came back with very low WBC. After re-doing the test a couple of times, we were referred to a hematologist at the Children’s Hospital. After a bone marrow biopsy, she was diagnosed with AA having 10% of her marrow present. For the last 3 years, we have anxiously taken regular CBCs and prayed a great deal. Our sanity was saved by turning it all over to God. It was in His hands. Thankfully, although her blood levels yo-yoed, she has returned to the normal range. She plays high school soccer and has been so positive through this! We thank God that we’ve had it so much better than most that have been diagnosed with this awful disease.


ID: 465

Member: Sandy

Email: sandytu@aol.com

Diagnosis: Mom diagnosed with AA or MDS plus Ovarian Cancer

Date:

Age:

Remission: False

Story: I read all the posts in hopes to find help for my Mom who in November of ’02 was diagnosed with hypocellular bone marrow. She has had 2 BMAs which showed neither MDS nor AA definitely. Then in Jan. 03 was diagnosed w/ovarian cancer. Of course both diseases are unrelated, however, the treatment for one will counteract with the other. We are at a loss we’ve been to two doctors (Memorial Sloan-Kettering in NY was one), with no possible treatment. I search all websites in hopes to find some help with some medication that the doctors are overlooking.


ID: 466

Member: Pat Goff

Email: ellen3399@msn.com

Diagnosis:

Date: 8/02

Age: 58

Remission: False

Story: Went to an urgent care center for a month with the labs,etc. until a dr. finally noticed my low rbc count and sent me for a bone marrow biopsy. Started on Procrit 40,000 once a week and CBC once a month. Symptoms are a breathless feeling,weakness and low blood pressure Am still working as a LPN in a long term care facility four days a week. I smoked for forty years and quit two years befor diagnosis. Husband still smokes in the house. So I guess I never quit, although I have to clean air machines working to try to clear the air. I am very interested in what I should and should not be eating.


ID: 467

Member: Matthew B. Franklin

Email: livn_faith@yahoo.com

Diagnosis: SAA ATG NO RESPONSE-BMT PASSED AWAY 8-21-2002

Date: 8-01-2001

Age: 15yr

Remission: False

Story: ANY QUESTIONS CONTACT ME AT THE E MAIL. HE FOUGHT HARD. GVHD TOOK HIM.


ID: 468

Member: SaBrina A. Whetstone

Email: babygirldst98@yahoo.com

Diagnosis:

Date: October 1986

Age: 25

Remission: True

Story: When I was 8 years old I was diagnosed. My mother was concerned because I would not stop bleeding after losing a tooth, not to mention a mysterious burgundy colored mole on my lip had suddenly apppeared. My mother then took me to see the doctor. My pediatrician took blood work, next thing I know I was in an ambulance being rushed to St. Christerpher’s Hospital for children. Bone marrow was taken and the rest is……Needless to say after two 2 week hospital stays, numerious blood tranfusions, platelet transfusions, being home schooled for a year, numerious medicatons, not to mention steriods mixed with puberty….not a happy time 🙁 and emotional truama, it has been in remission for about 14 years……


ID: 469

Member: Magga

Email: Skulason@strik.is

Diagnosis:

Date:

Age: 37

Remission: False

Story: HI this is difficult I have AA and Iam waiting for my bonetransplant and its going to happen sometime in Mai I dont have the date jet .I have hat this illness for 22 years ,I dont now anyone in Icland how has AA and for soo many years I ditint now what was wrong whit me…and I DONT LIKE IT.


ID: 471

Member: Callie, sister of Wendy Woodall

Email: CGDaddio@aol.com

Diagnosis: SAA diagnosed 5/5/’03, DIED 9/23/’03

Date: 5/’03

Age: 43

Remission: False

Story: My dearest sister who has lived a clean life is laying in the hospital newly diagnosed aplastic anemia. Thirteen years ago she started gold injections for rhuematoid arthritis and underwent nearly two years of injections. Presently her doctors are not looking at this fact and prescribing a BMT. They are going the drug therapy route because she has arthritis in the first place making the likelihood of her having contracted this from her suppressed immune system. I don’t know. I am just frantic with worry, as my entire family is. This is horrible. Please help me to find hope. Update #1 is actually what happened before my first entry. Today’s date is 5/13/’03. About a month ago my sister complained to me that she was sleeping alot. Three weeks ago she thought she had a flu and then she began bleeding very heavily and an odd color menstral flow. She visited her ob/gyn and she didn’t think much of a woman in her 40’s with a heavy period, didn’t check her blood. Two days later the little red blotches, sores in her mouth and bleeding from her gums and elsewhere scared her enough to go to the ER. The ER doc took blood and told her this is quite common from a virus and let her leave and if anything came back in her CBC that they’d call her. The doctor went to a physician in charge three hours later stating she had allowed someone with platelets under 3K leave the ER and didn’t know where she was. She was found, admitted and the hunt began. She was tested for hepatitis, lupus, ITP, Leukemia, all the usual. Finally they did a bone marrow and found that it was empty, diagnosed AA and moved her to a bigger hospital that could help her in starting ATG, cyclosporine, steroids and the necessary platelets and blood. She was tooling along grasping the concept of her diagnosis when she got an infection. That was a very bad day! But she made it through thanks to God and the doctors. Looking back my sister remembers the sores in her mouth 5 months ago. She’s always had a week system because of rheumatoid arthritis. I’m flying out…I live on the East coast, she on the West (yes, our phonebills are historically astronomical)…to visit and support her, her family and to possibly be tested for bone marrow compatibility. She started the drug therapy Friday…four days ago, and her numbers are up slightly and she’s tolerating the drugs well…just the usual bloating and inability to concentrate. Her doctors there and her rheumatologist back east really believes this is a one time accute episode from a virus that initially attacked her liver and that her hope for being cured is good. I’ll keep you posted…someone, anyone email me to chat. Update #2- June 2, 2003….After 40+ days hospitalized, all the meds possible, three infections, bad serum sickness, and an unrelentless case of larygnitis, my wonderful sister has finally gotten to go home. She has her pic line in to administer “stuff” through. She’ll be going into the doc three times a week, but her whites are rapidly moving up and she has a neurtophil! I did get to visit with her in the hospital two weeks ago for a few days. I’m waiting to hear about my results of bonemarrow match tests but we’re not going to need that because I’m hopeful now that she’s cruising to good health. Keep praying! Update #3- No good news. So far drug therapy has not worked for dear Wendy. She was travelling everyother day to OHSU for reds and platelets, but was enjoying the days off to be home… until her CT Scan yesterday that showed fungal pneumonia. She’s very discouraged even though I’ve told her it may still work. In the meantime neither my brother nor I matched for BMT and they’ve begun a search for a MUD. She just must make it through this infection, find a donor, and live! Update #4- 8/30/’03,12:12 MUD was found for Wendy and due to the aspergillus fungal infection in her left lung they rushed the transplant which happened this morning at 3AM. She and I toasted and sang happy birthday. She’s very good today. Now we wait. Prayers are working…so keep ’em coming! Update #5- Wendy’s transplant was a success. All her numbers were doubling everyday, the fungus was shrinking and she was going to go home from the hospital on 9/26 but…brace yourself….her lungs hemmoraged massively and we lost her on the 23rd. We’re stunned, shocked, and heartbroken. It’s over…no more posts here for me. I’ll continue to pray for those trying to survive this illness.


ID: 472

Member: sandi mikat

Email: swmikat@gci.net

Diagnosis:

Date: 5/01

Age: 48

Remission: True

Story: I was diagnosed in May 01. I Have Systemic Lupus. Drs. thought it was a Lupus flare. Boy, did I fool them. Air-transporated from Anchorage to Seattle. Received ATG-steroids-serum sickness meds.etc. Sent home to AK. Counts didn’t return to normal. Back to Seattle. Back home to AK. From July 01 to Feb 02 I had transfusions every 2 days of red cells and platelets. Also on cyclosporine. Feb.02 had last bone marrow . Cells were showing signs of recovery. Baby steps my oncologist said, but steps. I haven’t had a transfusion since March of 02. Feel fine. I live in a small town outside of Anchorage. I don’t have alot of fiends. My Lupus has been in remission-Drs. think the cylosporine helped it maybe. I’m having problems with not panicking when I feel a little bit off or I see a bruise I don’t remember getting. Drs. in Anchorage don’t see alot of AA. Thats why I went to Seattle for treatment, I have a Dr.here-strictly follows my CBC’s and checkups. I found this board one night just looking around. Would love to talk with anyone else who’d like to talk. How do you stop the panicking? And, I need some remission feedback. Thank you. Sandi


ID: 473

Member: Kristy, privileged mother of Mia (12 yrs old)

Email: kristy@wt.net

Diagnosis: Childhood MDS

Date: 4-03

Age: 12

Remission: False

Story: After 6 months of unexplained Anemia, a BMB revealed Myelodysplastic Syndrome due to erythroid hyperplasia, increased iron and fibrosis of the marrow. The lovely hematologist gave us a grim prognosis and told us the only hope is a bone marrow transplant. Mia is stable in her counts for the last 6 months. Only her RBC are affected. Her MCV started at 96 and peaked at 101. Her HG ranges from 8-9. We are juicing 24 – 36 oz a day and making major dietary changes to include natural and organic foods. This is a fight and we have our gloves on !!


ID: 475

Member: Stephanie Ott

Email: Slojsw@aol.com

Diagnosis:

Date: Aug.2002

Age: 12

Remission: False

Story: Stephanie was dxed with Severe Aplastic Anemia in Aug.2002.She went in on Oct 9 2002 for ATG.She takes Cyclosporie,Bactrim And GVSF shots daily.She has had no response.She is receving platlet transfusions twice a week and blood transfusions every three weeks. You can visit My little girls website at www.caringbridge.org/wv/stephanieott. She is a remarkable little girl and I am proud to call her my daughter.She is going to Duke University because she has a 5/6 match of non-related cord blood.Please sign her guestbook and give her words of encourgement,She loves reading her guestbook and viewing all the posts. God Bless All, Susan mother of Stephanie


ID: 476

Member: katie

Email: little_lost_souluk@yahoo.co.uk

Diagnosis:

Date: july 2001

Age: 21

Remission: False

Story: i had cancer when i was 13 and was very ill. Someone up there liked me because after treatment i went into remission and after 5 years i thought that my life would be on a an even keel. i started styduing and have a job as a carer for people with learning disabilities which i enjoy so vey much. I have however been ill for the last couplel of years. I was diagnosed with Aplastic anaemia. I have had several blood transfusions and wash ours. I have been much better but just now i have really got ill again, iM about to start therapy with medication. I hope i can keep happy and optimistic.


ID: 477

Member: Dwi Listyarini

Email: dephie@eudoramail.com

Diagnosis:

Date: 14 June 2003

Age: 51

Remission: False

Story: I found my blood count is not normal when I was suffering from urinary tract infection last month. Now, my HGB is 7.4, platelets 89.000, and WBC 5200 with lymphocytosis. The diagnosis is hypoplastic anemia. My doctor said that now I’m in a good condition, but he is afraid that the function of my marrow will decrease more. Then I found this website, and it comfort me a lot, and i’d like to join this community. I’m very sorry if I have a very poor english.


ID: 478

Member: Carole owens

Email: caroleo@getwellinternational.com

Diagnosis:

Date:

Age: 50

Remission: True

Story: Botanical Herbal Formula (BH-5) for Aplastic Anemia (AA) Researchers: Ba X, Hoang MD, PhD Allergy Research Group Graeme Shaw MD Advanced Integrated Medicine Abstract: We have identified 5 herbs and created a specific formula ratio and concentration that has been shown to have great success in helping people with Aplastic Anemia. In order to evaluate the efficacy and safety of botanical herbs in people with Aplastic Anemia, we used a specific compound (BH-5) of 5 herbs in a special formulation and concentration. A group of 19 people with biopsy proven AA were enrolled in this prospective trial between February 1994 and December 2000. A minimum follow-up of 12 months was required. All 19 people were evaluated. Age ranged from 6-­67 yrs. The disease was confirmed by bone marrow aspiration and trephine biopsy. Physical examination and routine investigations were carried out monthly. Pre-treatment hemoglobin (Hb) ranged from 6.5 to 8.5 gm/dl (mean 7.4 gm/dl), absolute neutrophil count (ANC) ranged from 180 to 790/cu mm (mean 850/cu mm) and platelet count ranged from 3000 to 25000/cu mm (mean 16000/cu mm). LFTs,creatinine and blood pressure were within normal range. The entire group of 19 people was started on two teaspoons of BH-5 at a 5:1 concentrate powder twice daily, orally. All were transfusion dependent and did not response to the most standard treatment for AA: Cyclosporine. Results: After one month of using the BH-5 herbal therapy: ANC improved in all 19 people (mean 2400/cu mm), Hb improved in all 19 people (mean 8.6 gm/dl), and platelets showed improvement in all 19 people (mean 70000 / cumm). After three months of therapy: ANC improved in all 19 people (mean 3600/cu mm), Hb improved in all 19 people (mean 9.8 mg/dl), and platelets improved in all 19 people (mean 96000/cumm). 14 people remained in remission after the discontinuation of the BH-5 therapy for 12 months. 5 people experienced normal blood counts with the continual use of BH-5 therapy for more than 12 months. Overall, treatment was well tolerated with no significant side effects. The quality of life, liver and kidney functions have been improved remarkably. Conclusion: For people with refractory AA, the botanical therapy of BH-5 was absolutely safe and highly effective. Compared to Cyclosporine, the most used drug for AA, results showed efficacy in less than 20% cases and lower hematologic response. The side effects for cyclosporine are quite severe for some patients including: renal failure, gingival hypertrophy, severe fungal infection, severe abdominal cramps and a 24% death rate during treatment. We recommend the BH-5 therapy for all people with Aplastic Anemia as a much higher effective, inexpensive and absolutely safe therapy compared to the standard treatments: Blood-Transfusion, bone marrow transplantation and immune-suppressed therapy (mainly cyclosporine). Top of Page


ID: 479

Member: Supannee Harncharnsiri

Email: Supannee.Harncharnsiri@seagate.com

Diagnosis:

Date: May 2003

Age: 35

Remission: True

Story: Plan to do the BMT by July 2003.


ID: 480

Member: Pat French Kimmick

Email: kimmick@zianet.com

Diagnosis:

Date: July 1968

Age: 40

Remission: True

Story: I was diagnosed with AA , but with no known cause. I was only five and therefore treated the affair as though it was an inconvenience. I have recovered and have two teenage children. Never give up!


ID: 481

Member: Amy Stoughton

Email: advocarega@usa.net

Diagnosis:

Date: 01/96

Age: 26

Remission: True

Story: I was dx with SAA in January of ’96 while home on Christmas break during my first year of college due to heavy bleeding on my period. CBC found my platelets at 9,000. I was quickly placed in Emory Hosp. in Atlanta and treated with ATG after no bone marrow match was found. I was allergic to the treatment so I was placed in ICU while they kept me asleep for 4 days while I took the tx. After about several months we could tell that the tx had been successful and I have been on an up-hill climb ever since. Seven years later, my last CBC showed all my counts as normal & my platelets at 150,000!!! This is because of God’s grace & mercy. There is hope so NEVER GIVE UP!! You all will be in my prayers. Also, ever since my dx I felt more fatigued than before. I did change my diet & nutritional program 3 years ago and have felt wonderful since. I take wonderful nutritional supplements that make me feel more energetic and much better than before. If you’d like info, e-mail me & I’d be happy to share these products with you!! May God bless you & keep you!!


ID: 483

Member: Kelly Malone

Email: Kkfire59@aol.com

Diagnosis: update on cause for me

Date: November 1974

Age: 44

Remission: False

Story:  I have had aa for almost 29 years and recieved blood transfusionsever sence December 1975. and also desferal sence 1988 for iron overload. My spleen is enlarged from iron,i get blood every 3-4 weeks.i did ATG in 1991, with no results.im still hangen in there.but slowley dying.i now get weekly treatments of desferal for last 2 years. pray for me i have never met anyone like me before pplz e-mail me someone.thanks Just a little more info on my illness, Some think my illness was caused by a mosquito spray truck, that was in my neihborhood when growing up, my area was very well sprayed,cause the man who owned the truck lived a block behind us. I always ran inside & my mom alwaysed closed the windows! But i read once that it could be breathed or aobsorbed threw the skin. I once read a med book in hospital library about a factory out east in the 1950`s that everyone in the factory got aa from the cemicals they used on sunglasses ( foster grants) im not sure what happened to them all, but it wasn`t good i know! didn`t know to much about transfusions then. HI ALL AGAIN, JUST LITTLE NOTE TO SAY THINGS ARE THE SAME WITH ME STILL RECIVING BLOOD EVERY 4 WEEKS AND DESFERAL EVERY THURSDAY. SURE WOULD LIKE TO SEE A CHAT ROOM GO UP FOR AA PPL ??? IT WOULD BE LISTED IN HEALTH ROOM EITHER IN MSN OR AOL PLEZ LET ME KNOW IF GOOD IDEA ?/ ILL CONTACT BRUCE THANKS KELLY


ID: 484

Member: jim in AZ

Email: ciinc16@qwest.net

Diagnosis: SAA Apr 01 Response to treatment

Date: april, 2001

Age: 44

Remission: True

Story: The nightmare that was 2001 (months in hospitals fighting high fevers, allergic reactions to the horse stuff—it’s a sad day for a man to realize he’s more of a rabbit than a horse!, infusions, etc.) is now a blurry dream. Even tho I suffer from bouts of fatigue, my blood counts have been at normal to almost normal levels for over a year now. Worse for the wear & tear but happy to be alive & do almost all I could before.


ID: 485

Member: Carolyn

Email: sharkette04@yahoo.com

Diagnosis:

Date:

Age: 50

Remission: True

Story: I became suspicious with the bruising and bleeding that began early in 2001. My family doctor put it down to age but finally agreed to a blood test. I was sent to a specialist the day my results came out and was hospitalized for my first tranfusion the same night. I started at MD Anderson in 6/01 and was given ATG. I had moderate success but am currently on danazol, neupogen and procrit and have finally reached low normal counts as long as I maintain the drug regime.


ID: 486

Member: Kim

Email: xxpawldawlxx@hotmail.com

Diagnosis:

Date: Feb 16, 2002

Age: 16

Remission: True

Story: I have been struggling for the past year and a half wiht this disease. It has torn my life apart and i dont know how to get it back together.. i feel like giving up.. all i thiink about is relapsing.. my counts are still low, and i have only had ATG done. My heart was failing, my liver, my diaphram.. and my lungs collapsed, and i needed chest tubes.. my port also was infected the hole three months i had it in and no one belived me, and now its out of me.. i really wonder if i would have died when i came down wiht a 105.3 fever and has sepsis, that i could be one of gods angels and look down and help every sick child.


ID: 488

Member: Eric

Email: dogasicire3@yahoo.com

Diagnosis:

Date: 4/3/91

Age: 15

Remission: True

Story: In April of ’91 I was diagnosed with severe aplastic anemia. I was only two at the time, so I don’t remember much, but my parents will never forget it. I was always told that I was a miracle, that I was saved by God himself, but I always just smiled and nodded my head, as if I had any kind of clue what I went through. In July of ’91 I was scheduled to have a bone marrow transplant, but instead, on July 23rd I started to get better due to the cyclosporin treatments I was given throughout the three months I had this rare disease. Instead of getting the transplant, my doctor wanted to wait it out to see if I got any better. Fortunately, I did. The next 12-13 years of my life, I lived a healthy, normal life, besides the fact that I had to have blood tests yearly and, most upsetting, I couldn’t play football. Besides that, I was lucky to be alive. In February of ’03 I got an awful nosebleed that, due to my still low blood counts, didn’t stop bleeding for 5 hours. That’s when all of this mess started. My blood tests showed that my hemoglobin level was very low, and I received my first blood transfusion since 1991. My doctor, who has been my doctor ever since I was diagnosed, had to once again diagnose me with aplastic anemia, this time only a moderate case. For the past six months I’ve had to receive many transfusions and many blood tests. Finally, in May we heard word that there is a new drug that the National Institute of Health is experimenting with, and that I would be lucky enough to be accepted into the protocol. So in June I took my first trip to Washington DC and received the first dose of the medicine. I have to take a total of 5 doses, and 4 of them have already been complete. My fifth dose is schedule for Monday, August 11th. I can only pray that the medicine has some sort of effect. My parents throughout this whole time have been so helpful and supportive, which is exactly what a frustrated 15 year old needs. For those diagnosed with the disease, or those who have children with the disease, I can offer this advice. Don’t give up hope because miracles do happen.


ID: 489

Member: David Kyle Clarkson

Email: Clarksonclan5@hotmail.com

Diagnosis: Aplastic Anemia 6/99 relapse 3/03

Date: 6/99

Age: 14

Remission: False

Story: Kyle was diagnosed with SAA June of 1999. He was 10 years old. In August of 1999 he went through ATG(Horse Serum) with Cyclosporin, Bactrum and Predizone. He wasn’t supposed to go back to school until January of 2000 but he did so well that he went back to school Oct 1, 1999 with restrictions. He was still taking the Cyclosporin but was off of the predizone. In January of 2000, he was playing basket ball and even though his platelet counts were in the 130,000’s, we felt the ATG had been successful. In November 2002, Kyle complained that he didn’t feel right and wanted his blood checked so we called his doctor and had the CBC run and he was right, his platelet count has dropped. Through the next several months, we began having his blood checked every week or so and it was still continuing to drop. Kyle’s Doctor, Greg Brandt, SIU Oncology St. John’s Hospital, Springfield IL, consulted with Dr. Neil Young from NIH in Maryland and Dr. Young said to put Kyle back on the Cyclosporin to see if the medicine would stop the drop in his platelet count. It didn’t. Not only does the Cyclosporin make Kyle feel “weird” as he puts it, it’s so erratic in his system and we’ve yet to be able to nail down a daily dose that would keep it stable in his system. We made the decision late May 2003 to put Kyle into a new trial at NIH in Maryland but have hit many roadblocks. First, the trial wasn’t running because of needing Protocol approval, Second, when it was approved, we weren’t notified that it was up and running and Third, there was an age restriction put on the trial. A patient has to be 15 in order to qualify and Kyle won’t be 15 until December 30th this year. As of today, Kyle’s platelet count is 16,000, his red, white and neutrafil counts are extremely low and we still have to wait. Dr. Brandt did mention about the ATG with Rabbit Serum that we might try on Kyle because neither Dr. Brandt or we want to take a chance of waiting until December. We would appreciate any info on this ATG if anyone has any. Thanks, Theresa Clarkson(Kyle’s Mother)


ID: 490

Member: Michele Gougler

Email: alsautopa@aol.com

Diagnosis: AA with BMT from sibling

Date: Dec. 2002

Age: 35

Remission: True

Story: I went to the Dr because I thought I was depressed because my dad had just passed away from a battle with esophagal cancer and I just did not feel good. I had been going to the gym for 7 months, 3 days a week and seemed to be getting weaker and not stronger, I had swushing in my ears and could see pulsing in my eyes and my hair seemed to be thinning. my dr. ordered blood work just to make sure every thing was ok with my counts. well , 1 wk later he calls me and tells me all my counts were low especially my platlets at 27,000. I was immediately scheduled to see a hemotologists and he immediately did a bone marrow tap and said I did not have leukemia, what a relief. A week later I was told that he wasnt sure what I had and would have to go down town to the Hospital of Pennsylvania. So a week later I ended up in Dr. David Porters office. It took him about another month to figure out exactly what I had which was AA I was given the option to do the treatments or to have my siblings tested for a match. I have 2 brothers and 1 sister, well with alot of prayer, I left it in the hands of the Lord, if I had a match I would go for the BMT If not I would have to have the treatment. Thank the Lord my older brother was a perfect match for me and 3 wks later I was in the hospital having a bone marrow transplant. It was very tough physically and mentally,but I am 7 months out and my counts are great . My hemo is 12.1 , wt 2.6 and platlets are 145,000. they go up and down but seem to be holding steadier, I have not had to have any transfusions since 1 month out of the hospital and I probablly had about 15 bags of blood and about 7 bags of platlets all together. I have had no GVHD to this date which is sept 4, 2003 and I am being weened off of prograf and am almost off of it, Lord willing I will be off in 2 to 3 months. I am still weak and have to take naps in the afternoon, but that is probably because I have 3 kids!!! I have started walking around my neighborhood to regain strenth and hope to get back to the gym as soon as I am off my immune suppressent drug(prograf) . I wore my mask and gloves to stores and anywhere else their would be alot of people for 6 months and now I am just very careful and wash my hands alot. I have only been sick 1 time since I left the hospital and that was the 1st week I left the hospital, God has really blessed me!!! feel free to E mail me for more info. Stay positive and trust in the Lord, He will never leave you nor forsake you!!!! It has been 1 yr and 9 months and my counts are normal on low side, I am back to the gym 2-3x a week and just went back to work. I feel really good and have been told that I am cured, (and the dr does not use that term lightly) I am pretty much back to normal!!!! my counts are hemo 12.7, wt 3.7 platlets 154,000. I am seeing the dr. once every 4 months now.


ID: 491

Member: Allison Earhart

Email: tennischicklet101@yahoo.com

Diagnosis:

Date: April 1994

Age: 18

Remission: False

Story: The first night we moved into our new house, we got a call saying Lindsey, who is my sister, had to go to Riley Hospital. We ended up staying all night watch “I Love Lucy” until the doctor could see her. Later, Lindsey was diagnosed with Aplastic Anemia. And she needed a Bone Marrow Donor. Allison, which is me, was the only one in our family that had he same blood type. I was only seven at the time and i was so scared, they had to pay me a dollar for me to give them my blood. They even had to pay me five dollars for me to give them my marrow. The operation was a complete success, and we are now back to our old lives, living every minute, of every day of our lives.


ID: 492

Member: Larry Jaros

Email: LauraJaros@hotmail.com

Diagnosis:

Date: Sept 13, 2003

Age: 39

Remission: False

Story: I am actually not sure I am completing this correctly. I am not the patient, my husband, Larry is. This seems to be the most useful and imformational website I have found. I did email the AAFA and also the AA & MDS foundation but it can take two weeks to get a response and by then we will need new information and my emails will be outdated. We dont quite have a grip on what we are in for. My husband is home on 80 mg of Prednisone a day. We go to the doctor tomorrow. His counts on Friday the 19th were: Platelets 9,000, Red 6.8 and white 2.5. I dont have his initial counts but they have fallen a little so we may try something new tomorrow. This has been an awful roller coaster ride so far. One day things seem to be heading on the upswing, then the next day down we go. We have been married for almost 20 years, have four kids (19, 15, 7 and 8 years) and have been through a lot of ups and downs like most married people. He was unemployed for the first time in his life last year and we got through that without a hitch. We were prepared for everything but this. I will do any and everything I can to help him, of course. He is pretty sure he will be going back to work next week. I am not so convinced. I have asked every good person I know to pray for him and keep him in their thoughts. Tomorrow will be a big day…I hope it is not another down slide. My husband has never been sick before. He rarely gets so much as a cold…is/was extremely healthy…..does not smoke, drinks little, exercises etc so I guess that is all in his favor. He is not ready to get involved in any group or learn too much about this yet. All I know is that losing him is just not an option ( dont tell me otherwise just yet, please). Any advise for someone newly diagnosed would be great. I know our lives have now changed for ever. His doctor has been an oncologist for 25 years and says he has had five cases of this…I dont recall what he said their current status is…that first discussion was such a blur. One day at a time. Please wish us luck and enlighten us, if possible…Laura Jaros


ID: 493

Member: Scott Harrison

Email: lharri77@netscape.net

Diagnosis:

Date: 5/15/03

Age: 48

Remission: True

Story: On 5/13/03 i was hospitalized with low platelets, 5,000. After diagnosis of AA referred to specialist who felt it was MDS Treatment of ATG and cyclosporine started 6/03, and remained on this for 6 months slowly tapered off and now am medication free as of 9/10/03


ID: 494

Member: Steve Hersey

Email: shersey2@cox.net

Diagnosis: Remission 15 years and going strong

Date: june 1988

Age: 53

Remission: True

Story: In June of 1988 I went to my doctor’s office for a physical because i had been feeling fatigued. Early that evening I got a phone call from his office telling me to come to the hospital because I needed blood transfusions. Thats how it began. A collegue of my doctor’s was the chief of hemotology/onconlogy at New England Medical Center in Boston so he was called in that evening. The news was devastating to me. SAA, I had never heard of it. I was 38 yrs old, married father of 4 children hardly ever sick. The Doctors were straight foward , and i knew i was i trouble. MY brother came to see me in the hospital that very night and assured me that he would be there for any and everything and whatever we had to do we would do together. I am a furtunate man to have Mark for a brother. Within days we had decided on a course of action. The only one at the time that offered me hope, A bone marrow transplant, a 25% chance was better than no chance. With transfusions and drugs keeping me going I entered NEw England Medical Center in July of 1988 and after spending a few hours with my extended family entered the room in which I would be isolated for the next 7 weeks. I don’t remember the first 5 days of chemo, But i remember everything after that. The radiation, the fevers, the rashes the actual infusion of my brothers marrow and the waiting and waiting. Well i was released after 7 weeks with the normal rounds of follow up drugs. But here i am today free of fear of SAA , on no medications my counts have been great for years. A very Soecial thanks to Dr. Kenneth Miller who at the time was the chief of Hemotology/Oncology at New England Medical Center and to the worlds greatest Brother, Mark Hersey


ID: 495

Member: sarah Stofferan

Email: hotstoff_@hotmail.com

Diagnosis:

Date: may 15 2003

Age: 15

Remission: False

Story: My daughter was diagnoised on May 15 2003 we are waiting to find a bmt donor


ID: 497

Member: Behnoush Babzani

Email: PRSINMONKY@aol.com

Diagnosis: Aplastic Anemia Possibly need BMT

Date: 08/03

Age: 20

Remission: False

Story:  i am a 20 year old female who has recently been re-diagnosed with aplastic anemia. i was diagnosed for the first time at age 12, i was treated with cychlosporine, ATG, and prednisone; and it worked. i was all better! for seven years i was perfectly healthy, then two months ago the bruises and fatigue started and i went to the doctor where they told me i have AA again. the doctors want to do a BMT, but i’m nervous due to the side effects. they say since i’m so young i have a better chance of survival, but i’m still extremely terrified of a BMT. but i know that i can do this, i fought it once and i will do it again! i find it alot easier to handle my AA when i talk to other patients so i know that i’m not going through this all by myself! if anybody would like to e-mail me and talk i’m sure you’ll find it’s not as hard when you know there are others out there fighting just like you are… Behnoush


ID: 498

Member: Trish Quilt

Email: royaltree@hotmail.com

Diagnosis:

Date: 3/03 at the age of 2 1/2

Age: 3

Remission: False

Story: My son was diagnosed with Severe aplastic anemia at the age of 2 1/2 years old. I remember our trip to the hospital like it was yesterday, he was very pale, he fell alot, he had petiche all over his legs some on his body in other spots. I now know that these were signs of something being wrong. He got to take his first ride in a ambulance and helicopter that day. We live about 2 and half hours away from where they flew us so we remained away from home for almost 2 and half months which was hard but as long as he was being treated it didn’t matter how long we stayed away. The Doctor that seen him also thought it could be Leukima but that was ruled out the next day. My son has had a bone marrow biopsy & aspiration, a pick-line, a central line (2 1/2 years old with a central line he did great didn’t pull it or anything he had it for five months), he spent 13 days in ICU while they adminsterd the drugs and remains on medicine today. His counts seem to be stable his recent labs were 150 platelts, WBC was 6. and HGB 10.5 When we first learned he was sick his counts were way down his platelets were below 3 thousand and remained that way even with a transfusion they would go up and by night be back down. I lost track of how many platelet & blood transfusion he has had but it was a alot, I’m thank-ful for the people who donate. Thats a long story told in a short version, thanks for listening. Trish


ID: 499

Member: Tommy G. (and mom)

Email: Karelgal@aol.com

Diagnosis:

Date: October 2002

Age: 13

Remission: False

Story: Tommy is an Asian adopted male diagnosed with SAA in 10/02. Has received ATG x2 and is currently on daily Cyclosporine. No response from treatments yet. No matched sibling for BMT. The AA&MDS; told us it often takes up to a year for a response. Would like to hear from other parents. Thanks. Jenny G.


ID: 500

Member: Tabatha

Email: kuranosh@hotmail.com

Diagnosis:

Date: Jan. 03, 2001

Age: 22

Remission: False

Story: When I was Diagnosed in 2001. I was Working Two Jobs n’ Going to Night School @ Von Curtis Hair Academy- For that year I was tired but just ignored it all – But I just kept becoming more & more tired. Foods would also affect that – I stopped eating Turkey & drinking Milk because if I ate those things I would have to take a nap. – Eventually I had to quit my second Job & started missing more School. Like most People with AA I just made excuses… I never wanted to even go to any doctor’s – I’ve always felt that they only give you pills – but that’s just me…. <br> The biggest thing to me was Just being tired… Other than that I also had the Bleeding Gums (I still do) & rectal bleeding… I remember going Tanning & was very tan over the Summer & then in just a weeks time I remember having to buy Make up because my Skin Tone Had Gotten Much Paler – But I have always been very pale so I didn’t think much of that. <br> Eventually ~ Being a Girl n’ all I had to go to get the Yearly “Girl” Check up – I walked in & all the Nurses and staff were stairing at me & whispering to each other (of course that made me feel quite unconfortable). When my name was Called, I went back in the room & the nurse/doctor? (cant remember which it was now LOL) She just kept telling me how pale I was – My Mother & I would just start giggling & telling her “Ya I’m Always Pale”. But luckily I had a really good doctor who was really on the ball. She insisted that I take a test – One of those Poke your finger’s, Spin it through a Machine type of tests. She then told me- that My hematocrit was 20 (just from the Spinner thingy) – She then told me to Skip school & either go to the emergency room or see my family doctor & then again I blew it off kinda giggling (I was clueless of what it even ment). So we went to Lunch. After Lunch we went home & that’s when I started feeling really sick, Very Cold, & Nervous feeling. This is also when I looked in the mirror – I had seen that my lips had turn BLUE!! @ that point I really panic’d. Mother Then called the family doctor – I went down to see him – Got a Blood test, Went home – Called the Church to get a Blessing (which made me feel a little better)… & then waited… <br> I finally tried to go to sleep – but just didn’t feel right so my Mother & I started to get ready to go to the emergency room – when my doctor called – It was 1:00 a.m. (la la la la la This is such a long Story & I’ve told it so many times *lol*) He told my Father who had answered the phone that my Hematocrit was at an 11 & not to startle me that it could cause a heartattack… So then we get to the hospital & I’m sitting there with the nurses – they are taking my blood pressure & we are just talking … They didn’t know I was sick & that I was the one that my doctor had called ahead for… So it was quite amusing when my doctor asked them why I wasn’t in a room getting Blood – They we’re just so socked… <br> By the time I got upstairs for the transfusion my hematocrit had dropped to a 7 & like other’s with AA – the nurses & staff was supprised that I was even talking or walking or even Laughing. he transfusion needle hurt alot – And the blood was VERY VERY cold (I thought my arm was going to fall off or get little Ice Cubes in them or something) – They gave me 4 unit’s of packet red blood cells & 2-3 units of platelletts because I didnt have very many at all… My white cell count was very low & They would tell me I couldn’t go home until they got up to a certain number. <br> <br> That year I had about 4-5 bone marrow Biopsie’s & I was given a transfusion every other week… <br> <br> Now a days – I’m on Cyclosporine 100mg – 4 pills a day, My Hematocrit right now is a 28 (now with out transfusions for a Year – which is good) with Platellets at a 58 ~ I’m not sure of the white cells but I believe that they are up. I have not sufferred any infections yet at all. which I feel very blessed about ~ But I am now a very Paranoid person of Germs and stuff. <br> It is very hard to take the Cyclosporine because of how it makes you feel – I’ve started growing Facial Hair (that I shave or Wax off) my breath always smells bad – even after brushing, My kidneys n’ liver sometimes aches, swelling in my legs once in a while & still very tired – & just depressed. <br> <br> Most days I sit at my computer Doing websites & sometimes playing Games. When I really should be getting some exercise or interacting with others – but Most days I really do not feel up to getting out or even talking to others- I mean I have alot of support in my family but really Nobody knows what it’s like & I’ve tired myself out trying to explain. <br> <br> So to keep myself busy I write poetry , Compose Music (songs), write in a journal, Computer Art, Websites & trying to take a Jewelry Making class that I usually never attend *lol* here are some links if you are currious : <a href=”http://www.acidplanet.com/artist.asp?AID=106016&T;=6822″ target”_new”>My Music</a><br><a href=”http://www.bloodpledge.org/noordinarysim” target”_new”>My “The Sims” Site (a game)</a><br><a href=”http://www.livejournal.com/users/0cean/” target”_new>My Journal</a> Also if any one who reads this ever want to talk – You can email me anytime – I check my mail often & I respond quickly *Smiles*


ID: 501

Member: Randy Reagan

Email: rreagancc@juno.com

Diagnosis:

Date: 09-13-04

Age: 50

Remission: False

Story: I was diagnosed September 13. I have been told I will undergo ATG as well as a Bone Marrow transplant. I am scheduled to see the transplant surgeon September 27 at Baylor Hospital Dallas. I understand they are very good. The hemotologist has told me I am not a transplant candidate right now. That is a last resort. I had no idea what Aplastic Anemia was until last Monday. Since then, most of my information has come off the internet. I understand treatment is very individualized because different people respond differently so there may not be an exact match for what I will be doing. Any advice or information is greatly appreciated. Last week I was told I have PNH. When I went to Baylor Hospital on the 27th, the transplant surgeon knew nothing about the PNH diagnosis…so essentially it was a wasted trip. The treatment plan has to be re-done. I don’t have a new appointment with the transplant surgeon, only the hematologist.


ID: 503

Member: CATRICE PAYNE

Email: CAT1969@SBCGLOBAL.NET

Diagnosis:

Date: JULY 2004

Age: 14

Remission: False

Story: MY SON WAS DIAGNOSED WITH AA IN SUMMER OF 2004.WE STARTED NOTICING BRUISING ALL OVER HIS BODY WHEN HE RETURNED FROM CHURCH CAMP. I JUST FIGURED THAT THEY HAD BEEN ROUGH HOUSING LIKE NORMAL BOYS DO. HE CONTINUED BRUISING FOR 2 MORE WEEKS. I WAS CONCERNED. LOOKED HIS BODY OVER REAL GOOD AND NOTICED SMALL RED DOTS ALL OVER. I PANICKED. GOT HIM AN APPOINTMENT TO SEE DR THE FOLLOWING DAY. RAN BLOOD TEST AND THEY THOUGHT HE HAD LEUKEMIA, SO THEY SENT US TO CHILDRENS HOSPITAL IN LITTLE ROCK. HEMOTOLOGIST DID MORE TEST PLUS BONE MARROW ASPERATION.THEY DIOGNOSED HIM WITH AA. HE HAD ONLY 10% OF BONEMARROW.THEY DECIDED TO SEE IF HE WOULD GET OVER IT ON HIS OWN IN 2 WEEKS,BUT HE GOT SICK WITH HIS PLATLETS BEING ONLY 1000 AND HAD TO GO BACK TO HOSPITAL.THEY DECIDED TO DO THE HORSE SERUM WITH CYCLOSPORIN AND STEROIDS RIGHT AWAY BECAUSE THE 2ND BONE MARROW ASPERATION SHOWED NO MARROW AT ALL. HE WAS IN COMPLETE BONE MARROW FAILURE. THEY WARNED US HE WOULD BE VERY SICK.PREPARED FOR THE WORST. HE DID VERY WELL. DID NOT GET ANY SERUM SICKNESS. HE FLEW THREW THIS TREATMENT LIKE A BREEZE.HE IS BEING TAPERED OFF OF HIS STEROIDS AND HIS COUNTS ARE TRYING TO HOLD. STILL GETTING SEVERAL PLATLET AND RED BLOOD TRANSFUSIONS.


ID: 506

Member: Karen Kropp

Email: mitzikk@aol.com

Diagnosis:

Date: September 2004

Age: 56

Remission: False

Story: My name is Karen and I have been recently diagnosed with AA. I am starting my ATG tomorrow. I am in excellent health and the only symptom I had other than my 3 bloods dropping was a lot of bruising. I do not feel sick ot tired. I am however scared and concerned. If anyone has any information please email me @ Mitzikk@aol.com however, I will no be home untill Tuesday (I’m keeping my fingers crossed) when the ATG is done so please give me time to respond. Also my Emails are blocked from unknown people so please be sure to indicate the emails AA related!!!! Thanks wish me luck! -Karen


ID: 507

Member: waraa

Email: waitenight2002@hotmail.com

Diagnosis:

Date: 10 oct2004

Age: 66

Remission: False

Story: i have very low prothrombin time and spleenomegaly the problem that plattelet in continous drop till reached40000 andstill till nowand i dont know the remedy


ID: 508

Member: Mindy Pember

Email: mepember@verizon.net

Diagnosis:

Date: November 1999

Age: 46

Remission: True

Story: When I was diagnosed, my Hbg was 6, my platelets were 8k, and my neutraphil count was almost nonexistant. My local hospital transferred me to Johns Hopkins, where I was given High-Dose Cytoxan without a Bone Marrow Transplant. I was one of the 19 patients in the study listed under the Cytoxan link on this website. After the insertion of a Hickman catheter, and numerous tests to confirm the diagnosis, determine that there were no lingering infections, and that my heart and lung function were sufficient, I was given the High-Dose Cytoxan for 4 days. I had no adverse unexpected consequences from the Cytoxan, other than the inevitable hair loss, and at 42, menopause. Due to the extraordinary high quality of care, and a whole lotta luck, I never developed a fever. My in-hospital stay was a little less than a month. I stayed close to the hospital in an apartment, coming in daily for transfusions/careful checks for another month, afterwhich I returned home. My last transfusion was a dose of plateles one year and 3 months after Cytoxan (following an appendectomy). I have been transfusion-free for 4 1/2 years. My current counts: Hgb: 14.2 WBC: 4400 Plt: 182 GNC: 2.7 My counts continue to rise during my twice-yearly checks. I got my life back!


ID: 509

Member: Ken Vinzant

Email: olotrop@hotmail.com

Diagnosis:

Date: 7/28/04

Age: 51

Remission: False

Story: My name is Lisa Vinzant. My husband Ken was diagnosed with SAA 2 1/2 months ago, July ’04. He is 51, had barely been sick a day in his life, when he experienced some blurred vision in one eye one evening as he was working on our farm. Didn’t think much of it, but when it failed to go away the next day, he got worried that it might be a mild stroke or some other vascular problem, and took some aspirin. Wrong move. Went to the ER; they called in an opthalmologist, who said he could see hemorrhaging in his eyes, but couldn’t figure out why. As he was holding Ken’s eyelid open, this big purple bruise the size of his thumb just appeared on his lid, as if someone had hauled off and punched him. The doctor was stunned, and ordered up some bloodwork. You know the rest. Low counts all around. They admitted him immediately, transfused him with platelets and packed reds, and started him on ATG a couple days later. Actually, maybe it was a good thing he took the aspirin–if that big old bruise hadn’t popped up so fast, they probably would have just sent him home. He’s just lucky he didn’t fall down. Anyway, ATG/cyclo/prednisone. Tolerated the ATG okay, except for feeling fluish for several hours after the first treatment. Got it a total of 5 days. The prednisone gave him such bad acid reflux he had to sleep sitting up, and the combination of steroids and low platelets caused a bleeding yeast infection in his mouth so nasty he could barely eat anything. Asked the doctor what would happen if he stopped taking it, and he said “You’ll probably feel really really tired.” Well, since he was already feeling really really tired, there didn’t seem much point, so we trailed him of it gradually– last one about 1 month after the ATG. About a week later he had a sudden spike in his creatinine levels, indicating his kidneys weren’t functioning properly. This seems to be a common side effect of the cyclosporine. I don’t know if there is any relation to having discontinued the prednisone, or the fact that we had switched to a less-expensive brand of cyclosporine (the smelly gelcaps that some of you have complained about– he stopped those after a week or so, couldn’t tolerate the odor–Gengraf is much better in that regard), at any rate the doctor cut him back from 900mg/day to 500, and said that if he didn’t see any change within a couple of weeks, he’d have to take him off it altogether. So much for tapering off gradually. We asked him how important it was for his overall outlook to keep the cyclo levels high, and he said “It’s not important at all if it ends up costing you your kidneys.” Good point. Anyway, his creatin did come down, at least to the level it was before it spiked, which is still kind of high (1.5), and he has much more energy now, so I guess we’re going to maintain at the 500mg level (300mg AM, 200mg PM– I thought you had to keep the level constant???) until futher notice. Doctor says this doesn’t change his plans for a second ATG course if needed, even if he has to discontinue the cyclo altogether, they’ll go ahead with it. Does anyone have any experience with ATG without cyclo? He’s also started talking up the whole BMT thing, which makes me nervous. Originally we were told that Ken is not a real good candidate because of his age, but that they would do it if he didn’t respond after 2 ATGs, assuming his brother or sister turn out to be a match. Now he’s even talking about the possibility of an unrelated donor!! After everything I’ve read on this site, this seems ill-advised, to say the least. I know I’m getting long-winded here, and this is the type of thing that would be more appropriate for the Forum, but that page doesn’t seem to be up and running right now, and I feel the need to communicate with some of you. He’s also been getting both procrit and neupogen injections once and twice a week, respectively. (Expensive!!! and no drug plan! HELP!!) They both seem to be working, even though the doctor said that procrit usually doen’t help AA patients because they don’t have enough stem cells for it to work on. It’s been over 3 weeks since his last red cell transfusion, and his Hg has been holding around 10.5-11.5, so that’s good, although he doesn’t seem to get the same energy boost from the procrit as he did from the packed reds, and he said that after getting blood, things tasted normal again for a day or two, whereas a lot of things he used to like (like bread) taste kind of weird to him now. At first, I took the fact that the procrit is working as evidence that he does still have some functioning stem cells, but after reading the discussion of erythropoetin levels in AA patients (usually way high, rather than too low, so erythropoetin injections don’t make sense) I’m wondering if this is just more evidence that his kidneys aren’t working as they should… This is soooo complicated! Anyway, thanks to everyone who has contributed info, insight, experiences and good questions to this site. It is so helpful to those of us who are new to all this. Please feel free to email me with any input. Aloha no & malama pono (much love and take care) -Lisa Vinzant


ID: 510

Member: joanna janowiak

Email: joannapanczyk1@yahoo.com

Diagnosis:

Date: 09-19-03

Age: 30

Remission: True

Story: I was diagnosed with AA in Sept of 2003. I was feeling tired all the time for about a year before my diagnosis. In July of 2003 I went to the doctor to get checked. I was complaining of constant headaches and pressure in my head. I had a head CT scan done. The doctor found no tumors and said that the headaches were probably stress related. I was sent home. I went back again to see the doctor in September of 2003 because my headaches continued and I was feeling extremly tired every day and I was on the 11th day (!!!)of my menstrual cycle. They tested my blood but the results didn’t come back until the next day. The phone rang early in the morning. I couldn’t get up from the bed. I was soooo tired and had no strength. It was the doctor. He left a message that I had to go to the hospital right away and that I needed a blood transfusion (???). I called my husband at work. I passed out on the kitchen floor while on the phone with 911. I was diagnosed with Aplastic Anemia two days later. And that’s when it all started… Here’s my story: http://home.earthlink.net/~bzl763/ Special thanks to Mindy Pember and Vivian Right for giving me so much hope. Also, I’d like to thank everyone who emailed me for all your kind words and support. I couldn’t do it without you.


ID: 511

Member: bob farabaugh

Email: zapped52@hotmail.com

Diagnosis:

Date: 08/15/02

Age: 58

Remission: True

Story: Shortly after having carpet and composite wood flooring installed, I developed bruises in several places. My md sent me to hospital, where I was declared critical with platelet count of 5000 pancytopenia. A bone marrow biopsy showed no cells at all “blank” is how the doctor put it. I had ATG with prednisone amd cyclosporin several weeks later. remission occurred about 8 weeks later. I continue on cyclosporin (neoral). Counts low normal. back to work almost two years now.


ID: 513

Member: Seth Gehlken

Email: asgehlken@aol.com

Diagnosis:

Date: 10/03

Age: 26

Remission: True

Story: I was diagnosed with aplastic anemia in October of last year. I live in Alabama and none of the doctors here could really help me. I ended up going to NIH in Bethesda for ATG treatment in December. The treatment was rough but it was worth it because now I am doing much better. My blood counts have been normal for the past six months. I am on a steady decrease in cyclosporine over 18 months. The program that I am on consists of taking the cyclosporine for a longer period to make sure the t-cells are destroyed. If you have just been diagnosed and are as lost as I was in the beginning, I would recommend contacting NIH. They seem to have the most knowledge and treatment options than anywhere else. If you are a younger person ATG treatment may be the best option for you. The doctors in my hometown immediately wanted to do a bone marrow transplant, but I had the treatment done instead and I feel that this was definately the best choice for me. Feel free to email me. 🙂


ID: 514

Member: Lisa (mom to Taylor)

Email: nap4mom@yahoo.com

Diagnosis: Age 11 years DX SAA 7/04 ATG X1

Date: 7/9/04

Age: 11

Remission: False

Story: My 11-year-old daughter was diagnosed 7/04 after some bruising. ATG X1 August 2004. Currently on Cyclo., Epo, and Neupo. 58 days since last transfusion! Her counts currently are ANC=1500; RBC=8, Platelets=22,000. Are staying about the same.


ID: 515

Member: Carol Caldwell

Email: carolcaldwell@cox.net

Diagnosis:

Date: 11/16/2004

Age: 76

Remission: False

Story: My father was just diagnosed with week with Aplastic Anemia. He is 76 years old. He has been extremely healthy up until this time and they have no cause for it. Due to his age he is not a candidate for a bone marrow transplant. The have already started him on the horse serum therapy and we are praying that it works. I am interested to know if anyone has any information regarding older people with this disease. Any information we can get at this point would be appreciated.


ID: 518

Member: GREG

Email: WWW.ALDABRAMANIA@YAHOO.COM

Diagnosis:

Date:

Age:

Remission: False

Story: FEBRUARY 2004 I HAD WENT TO MY GENERAL FAMILY DOCTOR FOR A EAR INFECTION. HE FELT MY SKIN COLOR WAS OFF AND SENT ME FOR ADDITIONAL BLOOD TEST. THE RESULTS FROM THE TEST WERE DEVESTATINGLY LOW. WBC-1.4, RBC-2.4, HGB-8.3, AND PLTS-23. HE CALLED ME BACK INTO THE OFFICE THE SAME DAY AND INQUIRED IF I FELT BAD OR WAS BLEEDING ANYWHERE. I FELT FINE, OTHER THAN MY EAR INFECTION. HE HAD NO CLUE WHAT WAS WRONG AND ADMITTED ME DIRECTLY TO THE LOCAL HOSPITAL FOR FURTHER TESTING AND ADDITIONAL EVALUATION. THEY COMPLETED SEVERAL TRANSFUSSIONS AND BEGAN A BROAD RANGE OF TESTING. WITHIN FOUR DAYS THEY RULED OUT MANY POSSIBLE DIAGNOSISES, AND REFERED ME TO A LOCAL HEMATOLOGIST. AFTER SEVERAL ADDITIONAL TEST AND BEING TRANSFUSED DAILY FOR PLTS FOR TWO WEEKS I WAS DIAGNOSED WITH A BONE MARROW INTRUSION. THE PLAN WAS TO MONITOR ME DAILY FOR BLOOD PRODUCTS AND RECIEVE AS NEEDED, UNTIL THIS INTRUSION WORKED ITS WAY OUT. I WAS NOT COMPLETELY CONVINCED THAT THIS WAS THE PROBLEM OR THE ANSWER, SO I WENT TO A DIFFERENT HEMATOLOGIST FOR A SECOND OPINION. HE CONDUCTED SEVERAL MORE TEST, INCLUDING A BONE MARROW BIOPSY. THE BIOPSY SHOWED LOW CELLULARITY, HOWEVER I HAD A HIGH RETIC FACTOR. THE SECOND DOCTOR WAS NOT SURE OF A DIAGNOSIS, SO HE REFERED ME TO MOFFIT CANCER RESEARCH CENTER IN TAMPA FLORIDA FOR ANOTHER OPINION. I MET WITH DR. LIST, A OUTSTANDING DOCTOR, WHO WAS SURE I HAD AA. HE HAD ME TESTED FOR ONE OTHER POSSIBLILTY PRIOR TO ANY TRATMENT. ON MARCH 11, 2004 I WAS ADMITTED AND RECIEVED FOUR DAYS OF EQUINE ATG, ONE ROUND. I HAD COMPLICATIONS ON THE FIRST DAY, MAINLY TREMORS AND A FEVER. MEDICATIONS GOT ME THRU THE OTHER THREE DAYS WITH NO COMPLICATIONS. I WAS RELEASED THE DAY AFTER EQUINE ATG WAS COMPLETED. CBC WAS WBC-.5, RBC-3.12, HGB-10.2, PLTS-8. I WAS MONITORED DAILY BY THE LOCAL OUT PATIENT INFUSSION CENTER. I RECIEVED TEN PLT TRANSFUSSION AND ONE RED BLOOD TRANSFUSION BETWEEN MY RELEASE FROM MOFFIT, MARCH 15, 2004 TO APRIL 15, 2004. AT THAT TIME MY WBC AND PLT COUNTS BEGAN TO MAINTAIN AND SLOWLY CLIMB UP. I WAS TAKING 400MG BID OF CYCLOSPORINE FOR SOME TIME, TRYING TO MAINTAIN A 200 TO 300 LEVEL IN MY SYSTEM. ONCE NY COUNTS SLOWED A UPWARD TREND THE DOCTOR BEGAN TO TAPPER ME OFF THE CYCLOSPORINE BY A VERY SLOW RATE. I WAS OFF WORK FOR FOUR AND ONE HALF MONTHS UNTIL JULY 01, 2004. MY CBC WAS WBC-2.7, RBC-2.9, GHB-11, PLTS-86 ON JULY 01, 2004. MY COUNTS CONTINUED TO CLIMB SLOWLY. SEPTEMBER 15, 2004 A SECOND BONE MARROW BIOPSY WAS CONDUCTED. THE MARROW SHOWED GOOD CELLULARITY WITH NO DISPLASA. ON JANUARY 05, 2005 MY CBC WAS WBC-4.6, RBC-4.08, HGB-13.8, AND PLTS-123. I AM GETTING READY TO TAPPER THE CYCLOSPORINE TO 50MG BID FOR SIX WEKS. I HAVE HIGH BLOODPRESSURE AS A SIDE AFFECT, HOWEVER IT IS CONTROLLED MY MEDICATION. MY STORY IS THIS SIMPLE. THE DOCTOR RELATED THIS WAS A OUTSTANDING RESPONSE TO THE EQUINE ATG TREATMENT, AND DID NOT SEE A PROBLEM WHEN TAPPERING OF CYCLOSPORINE. MY TOXICITY LEVELS WERE ALWAYS WITHIN NORMAL RANGE, I THINK DRINKING ONE GALLON OF WATER A DAY CONTRIBUTED TO THIS. THE CYCLOSPORINE CHEWED UP MY MAGNESIUM LEVELS AND CAUSED TREMORS. OTHER THAN ISSUES RELATED TO THE TREATMENT I HAVE NEVER BEEN SICK OR HAD ANY SERIOUS COMPLICATIONS. THEY HAVE NO IDEA WHAT CAUSED THIS AA. I AM A POLICE OFFICER AND WORK AS A K-9 HANDLER. I ALSO HAVE A VERY SUCCESSFUL GIANT TORTOISE FARM. I WOULD LIKE TO SHARE ANY FURTHER INFORMATION TO ANYONE REGARDING THIS CONDITION AND HOW I WAS TREATED. JUST E-MAIL AT WWW.ALDABRAMANIA@YAHOO.COM. GREG // S.W. FLORIDA


ID: 519

Member: Mia K. Elisdóttir

Email: miakrog79@yahoo.dk

Diagnosis: SAA

Date: 01-09-1998

Age:

Remission: True

Story: SAA 1998, ATG 1998-1999×2 -2004. BTM 10-08-2004.


ID: 520

Member: Guatemala

Email: guatemala.geo@yahoo.com

Diagnosis: AA Severe

Date: 1979

Age:

Remission: True

Story: Well, I read most of the stories in this site. A lot of them are similar to mine. Except that mine happen in a third world country after the earthquate, where I lost the only people who could take care of me. I would feel tired all the time. I would feel as if my heart was going to come out of my chest. I felt so alone…well I was alone. But to any of you going through this Aplastic Anemia. Let me tell you. Some of us can make it. I am still here, well with some metal parts in me but, that is thanks to Prednizone etc…but still here. I was diagnosed at age 15. I am now 40 plus – it can be done! remember the best medicine is you, just believe in you. I had the horse thing done to me and the bone marrow-match was not good. So if you have any questions please write to me. guatemala.geo@yahoo.com Mario


ID: 521

Member: Kaleigh (I’m her mom- Julie)

Email: kismit1496@yahoo.com

Diagnosis: MAA

Date: 1-26-05

Age:

Remission: False

Story: Hello…my four year old daughter was recently diagnosed with moderate aplastic anemia. Her wbc are 2 and platelets 13 anc 650 as of last week They’ve been pretty stable there for a while. Six weeks age at my son’s well baby check up I mentioned to the pediatrician about Kaleigh’s bruising and asked them to check if she was anemic. The cbc showed low white blood cells, red blood cells, hemoglobin and her platelets were 17k. As soon as the office got the results I got a call to take her to children’s hospital without delay. We spent a week inpatient. At first she was diagnosed with ITP. Given IVIG and it didn’t work. Then came the bone marrow test….they didn’t get enough. They waited another month…counts stayed relatively the same although platelets dropped to 12 at one point. Second bone marrow test they poked each hip three times (and didn’t tell me so when I removed her bandages I was horrified at how much worse it was than before) this time they waited a week for results. That brings us to last wednesday when I was told she had MAA. We started cyclosporine the same night. And now what? wait?


ID: 522

Member: Paloma Sanchez

Email: palsanc13@yahoo.com

Diagnosis: Aplastic Anemia

Date: 12 – 24 – 03

Age:

Remission: True

Story: I waz diagnosed with Aplastic Anemia when I was 15 years old. Now Im 17 years. when I first was in the hospital the doctors treated me with the ATG and then gave me cyclosprine. Im steel taken the cyclosprine. But I sometimes feel like shit. The cycloprine makes me feel like shit. Im also steel going to the hospital for check-ups. Im not also having my period. there giving me the deposhot every three months. Im tired of always going to hospital and feeling like shit. I don’t know no one that has Aplastic Anemia. Smetimes I wonder why i got this disses. Sometimes i feel like shit that I just want to die. why does it happen to me. well if someone can help understand why did i have this disses. I living in Glendale, California


ID: 524

Member: Breanne

Email: brea122001@yahoo.a

Diagnosis: Aplastic Anemia

Date: january 2004

Age:

Remission: False

Story: I was diagnosed with osteosarcoma when was 20 years old. I went through chemotherapy for just over a year with my main drug being cisplatin. I was in remission for about six months when i had a relapse. The doctors decided that the best course of treatment was to have a BMT, and I was lucky enough to find a match. I went through ten days of intensive chemotherapy with Cytoxin and I had the BMT and I was in remission very quickly. I went on to lead a normal life. I continued my university education and became a teacher, I got married and had two children. All was going well until i started to feel extremely tired and physically out of shape. I was out of breath, my body ached all over and I knew something was wrong. I went to my doctors and after several tests and bone marrow aspirations I was diagnosed with severe AA. My plateltes were at 13,000, wbc were 0.8, and I was admitted to the hospital immediately. I recieved several blood transfusions and I started the ATG and cyclosporine treatments. they were effective for a very short time and then they just stopped working. As i have already had a a BMT it was not really an option for me to have another one, so my doctor said that he would help me to find other options. I looked into various trials both here in Canada and in the States but there were none that suited my needs or that would accept me. My doctor suggested Chinese medicine. I went to see the doctor and he has me on oncon and various herbal therapies to improve my immune system. I am also on a very strict diet of greens, grains and beans which is supposed to detoxify my system. I started this two weeks ago, and I am crossing my fingers. My children need me.


ID: 525

Member: MICHELE GOUGLER

Email: ALSAUTOPA@AOL.COM

Diagnosis: AA WITH BMT

Date: NOV 2002

Age:

Remission: True

Story: SHORT STORY, WAS DIAG. WITH AA NOV 2002, DECIDED TO GO WITH THE BONE MARROW TRANSPLANT BECAUSE MY DR. AT HOSP. UNIV. OF PENN TOLD ME THAT I WAS YOUNG, HAD 3 KIDS AND IF I WANTED TO BE RID OF AA THAT I SHOULD CONSIDER BMT AND ALSO MY OLDER BROTHER WAS A PERFICT MATCH. I HAD BMT JAN 2003 AND WAS IN THE HOSP FOR 5 WKS. IT WAS VERY TOUGH, BUT WITH ALOT OF PRAYER I GOT THROUGH IT. I HAVE HAD. NO GRAPF VS HOST AND I AM OFF ALL DRUGS SINCE 1 YEAR OUT. I HAVE JUST HIT 2 YEARS AND MY COUNTS ARE GREAT (HEMI 12, WC 4.5 PLATE 150,000), I GO TO THE GYM 3 DAYS A WEEK AND HAVE STARTED BACK TO WORK ALSO. DONT GET DISCOURAGED, IT TOOK ME ABOUT 1 1/2 YEARS TO FEEL THIS GOOD. I SEE MY DR EVERY 4 MONTHS NOW. FEEL FREE TO EMAIL ME IF YOU HAVE ANY QUESTIONS.


ID: 526

Member: Samar Chaker

Email: curlytops09@hotmail.com

Diagnosis: Aplastic Anemia

Date: July 1997

Age:

Remission: True

Story: Hi I’m Samar and you can actually watch my story by going to www.donorsforlife.ca From there you can scroll down and click on Your donations make a difference. Meet Samar. If you have any questions please feel free to e-mail me and I would love to get back to you and help you in any way I can.


ID: 527

Member: PUN, Pampha

Email: KBP965@hotmail.com

Diagnosis: Aplastic anemia

Date: 2001

Age:

Remission: False

Story: MY WIFE IS SUFFERING FROM APLASTIC ANEMIA SINCE 2001, STILL I CANOT CURE IT PROPERLEY, EVERY ONE MONTH INTERVAL NEED TO GIVE 4-5 PINTS OF FRESH BLOOD.SOME DOCTOR TOLD TO ME THAT UK IS THE BEST FOR THE TREATMENT SO CAN YOU HELP ME WHERE AND WHICH HOSPITAL IS THE BEST, HOW MUCH DOES IT TAKE AA WELL AS HOW LONG? PLEASE. MY EMAIL ADDRESS IS kbp965@hotmail.com and mobile # is 077 6016 1012. THANK YOU.


ID: 531

Member: Jack Louie

Email: coulonthelake@yahoo.com

Diagnosis: AA + Myelodysplasia

Date: 5/2002

Age:

Remission: True

Story: I am currently 9 1/2 months post BMT. Today is Monday, June 20. Fortunately, it has been a fairly smooth trip thus far. Various small bumps in the road along the way but nothing to get too nuts about. I have been transfusion free since October. My HCT is roughly around 34%, my platelets are around 70-80k and WBC’s are in the 4.5’s. Due to a recent GVHD skin rash, I am back on high dose tapering steroids and cyclosporine. The GVHD has all but cleared up but because of the steroids, I did acquire a viral infection. My hickman line was pulled about 3 months ago so I did have to have another PICC line put in. Only a temporary addition to provide antibiotics. Overall, I feel pretty good and able to do most things within reason. I have not returned to work yet but that should be coming soon. Feel free to email me if you have any questions pertaining to my diagnosis or the BMT. I would be happy to be able to talk to you. Jack


ID: 532

Member: Patricia Shiels

Email: patriciashiels@hotmail.com

Diagnosis: Aplastic Anaemia

Date: April 2004

Age:

Remission: True

Story: It was during the Easter holidays when my Mum made an appointment for me to see a doctor, she was concerned about me as I was looking like death warmed up! I was suffering badly with my sinuses and had extremely swollen feet but I put this down to my job as Cabin Crew. I begrudgingly went along to the appointment to appease my mother, late that night a doctor came to my parents home with my results. I had anaemia ( so what I thought) and low platelets (never heard of them)! He told me to go back to my doctor for another blood test. I was referred to the hospital were I had to have a bonemarrow biopsy, which wasn’t as bad as I was led to believe(maybe because I asked for plenty of anaesthetic)! I was told there was nothing ‘sinister’ in the marrow and I could just have had a virus. Meanwhile one evening whilst visiting my Dad in hospital my sister Linda showed me an article in one of the daily papers, it was about a young girl aged nine who had all the same symptons as me, her mother was looking for a bonemarrow match for her, and said she would die if one was not found. The little girl has Aplastic Anaemia. I hoped that this wasn’t what I had, I comforted myself in the thought that it could be any number of things. A few days later it was confirmed I had severe Aplastic Anaemia. I then spent a week in hospital having my treatment, I was given Campath (the rat) which is a relatively new treatment for AA, I was told that it is normally given to leukaemia patients who don’t respond to chemotherapy. I also had 2 lots of platelet trasnsfusions as they had gone down to 9. When I left hospital I was put onto cyclosporin and antibiotics, and throughout the summer I was going in for regular blood tests. I found myself back in for 3 nights after picking up an infection whilst waiting for my first red blood transfusion. In total I had only 1 transfusion of red and 3 platelet transfusions. I feel like I’ve had an easy ride with this illness in comparison to some of the stories I’ve read. I had 5 months off work and now I’m back pushing trolleys up aisles, however, I do not want to tempt fate. My consultant recently referred me to see a transplant doctor because my counts are showing a trend of declining. I had to have another bonemarrow biopsy ( this time I felt it)! That was 4 weeks ago I will find out in another 2 weeks if they want me to have a transplant or depending on the state of the marrow as to whether I’ll have another immunosuppressive treatment, maybe the horse or rabbit. I feel very positive and I strongly believe in the mind controlling the body, I am also very lucky in that I have another sister, Caroline, who is a match. Meanwhile I am still working and leading my life and I try not to think about what might happen and concentrate on happier and more positive thoughts.


ID: 533

Member: Patricia Shiels

Email: patriciashiels@hotmail.com

Diagnosis: Aplastic Anaemia

Date: April 2004

Age:

Remission: True

Story: Following on from earlier I missed a few details about myself, I am 31 years of age and I live in the UK. My parents want to send me to America if I need a BMT as they were given the impression that the treatment is more advanced over there. I am not sure and I am interested in finding out. If anyone is more clued up than me I would appreciate it if you would contact me, also if you live in the UK or Ireland and have or have had AA I would be interested in exchanging stories. I would also like to thank my Mum for her intuition, where would I be without her.


ID: 534

Member: Ryan Collins

Email: ryanwcollins@hotmail.com

Diagnosis: Aplastic Anaemia/Myelodysplastic Syndrome

Date: April 2004

Age:

Remission: False

Story: I live in Sydney, Australia and was diagnosed with Aplastic Anaemia after the usual symptons and being told to go the emergency by my doctor when blood tests came back. I had 2 lots of ATG (equine and then rabbit) over a couple of months along with Cyclosprine and Prednizone. I had a partial response with the blood counts still low but at safe levels for about 10 months (Haem hovered around 12, White Cells 1.5-2.5, and platelets 50). I also got severe Serum Sickness from the rabbit ATG, becoming immobile, joint swelling giving me a lot of pain that out me on morphene for a few days. A bone marrow biopsy revealed a cytogenetic abnormality which my doctor said would only be a matter of time until a BMT was recommended. I’m at a high risk of developing Acute Myeloid Leukemia. I have done a fair bit of reading on the subject, from science journal to internet articles and am happy that a BMT is the way to go. My doctor has been to international bone marrow conferences and spoken with other experts who confirmed his opinion. I have just had my 3rd lot of ATG (equine) and every dose gave me severe fevers, shivers, nauseous, sore stomach, ear infection, loss of appetite. Was on all sorts of IV antibiotics for infections and had a non-stop cough for 2 weeks. A 10/10 unrelated bone marrow donor has been found for me in Taiwan and it looks like its all going to happen within a couple of months. In the meantime, I am going to try and eat as much organic, natural foods as possible, concentrating on veges, fruit and grains. Probably going to cease dairy products and wheat as well and see what happens. This is a great website from which I have learnt a great deal, esp from other people’s experiences. (27 July 2005)


ID: 535

Member: Celina Hamm

Email: h2sale@aol.com

Diagnosis: Aplastic Anemia

Date: Aug1987

Age:

Remission: True

Story: I was 19 years old pregnant with my first child when I was diagnosed.I went through all the blood transfusions and steriod treatments,also seeing the doctors and getting cbc’s done every week and every other week for over a year.I only have one sister and we wasn’t a match so transplant wasn’t an option for me,but that was alright because no one else matched me either.Finally,after the first year,I was in remission.They gave me two years to live.I relapsed in 1990 and it was really bad.After months of transfusions again and going through everything a second time I was asked about trying the ATG serum,horse serum.I jumped at the chance not even paying any attention to the risks.Well,to make a long story short,I did have ALOT of complications but I made it and I have been in remission since 1990,Thank God!The only thing now I’m facing is joint replacements because of the steroids.The pain is bad but I can’t complain when I’m still here.So God Bless All Of You and Stay Strong.


ID: 536

Member: Sawang Boonyuen, passed away june 24th, 1996

Email: Fong_cm26@hotmail.com

Diagnosis: Aplastic Anemia

Date: March 1996

Age:

Remission: True

Story:  My name is Fongchan and I am from Phrae, thailand. I had an adopted brother named Sawang. he wasn’t adopted officially, but he lived with my family for a long time. He had Aa when he was 14 and died. On March 1st, Sawang Boonyuen was trimming grass when he got aterrible haedache. He was teaken to a local hospital, and the doctors were shocked at his low blood count. 2 days later he was released. By the next week he has a fever and lots of red spots. My father took him to a provincial hospital, and he was sent to a cancer center in another province. There he was diagnosed with AA and sent to Chulalongkorn hospital in Bangkok, the capital city. They couldn’t do a bone marrow transplant becaues all his sibblings had a different mother or father. I’m not sure what treatment he was given, but it was new at the time. it didn’t work, and he passed away at 6 in the morning, June 24th, 1996. My family was so heartbroken. when i was in America to study 2 years ago, I found out more about AA treatments. I’m glad that it has advanced, and I hope Thailand learns more about it soon.


ID: 538

Member: arnado radovix

Email: radovix@yahoo.com

Diagnosis: aa

Date: 02/2004

Age:

Remission: True

Story: My whife had a diagnosis of AA in feb. 2004 in Caracas, Venezuela, had 3+3 days of Neupogen. We come back in Italy and she was in S. Matteo Hospital in Pavia the 29 april 2004. She had only one treatement of ATG (Horse serum), one week, and Ciclosporine up to march 2005 Ciclo…suspended since then. Now the count is wbc 3.5……around this value in the last 6 month hgb 11.7……around this value in the last 6 month plt from 55 to 34 ……around this value in the last 6 month The doctor here says she is out of problem. Che razza di malattia!! Spero ce la facciate tutti!! She is special to me! Hope all this ends well, for all of YOU!


ID: 539

Member: Myron Littman

Email: myron.littman@gmail.com

Diagnosis: Aplastic Anemia

Date: dec 2005

Age:

Remission: True

Story: Hi Everyone. I am a 24 year old male. 10 months ago I found out I had Aplastic Anemia. I went to the Dr. cause I had Petichia and a spot in my vision, also i had a pounding pulse in my head. Anyways I was given the ATG in large amounts for 4 days and cyclosporine for 6 months. I live in Calgary which has 1 million people and I know of 2 people who have aplastic anemia here besides myself. My body did remarkably well on the toxic drugs and my counts started climing after 3 months. After 6 months I stopped the drugs and have been doing good and my counts are improving. After finding this website I am following a lot of Bruce’s suggestions like using organic food, organic body and health products, using an aircleaner ect . . . I’m not officially in remission yet, my counts are still low 108 H, 2.4 WBC, and 75 platelets. But i’m feeling alot better and I think if I continue to avoid toxins and get lots of rest and meditate and don’t get stressed out I can beat this ‘thing’ all on my own. I just post my story as I am doing good, to encourage anyone who has AA that it is possible to get well.


ID: 541

Member: Helen Ryan

Email: helene-ryan@dodo.com.au

Diagnosis: aplastic anaemia

Date: 2001

Age:

Remission: False

Story: I was diagnosed with AA August 2001 aged 58. Treated with Atgam, Prednisone and Cyclosporin.Also tried Chinese medicine for 2 years but relapsed in 2002. Now on just Cyclosporin 100mg daily. Counts are low but have stabilsed. I am trying the raw food route with lots of juices. Also trying to get off processed foods completely, growing my own veggies. Would love to hear from others as there are no support groups here in Australia. Will answer all.


ID: 546

Member: Geraldine Torres

Email: boricinina@sbcglobal.net

Diagnosis: Aplastic Anemia

Date: feb.17.2005

Age:

Remission: False

Story: I am a 16 years old, but had gotten diagnosed when I was 15.I got diagnosed with Aplastic Anemia.At the time I had got diagnosed I had no clue what that sickness was(never even heard of it).I never really went to the hospital for anything.I live with my grandmother and on february 17,2005 i went to school fine.Then came home early because I was having an extremely heavy period which at that time my grandmother didnt fell was right.She then brought me to the hospital,they took test and sent me across the street to the emergency room.The doctors from the emergency room had explained to me and my grandmother i had low white blood cells,red blood cells,and no platelets.That’s what made my period so heavy.It was a scary thing for me because of young I am,and from never getting sick to this.It was then they realized I needed medical attetion imediately.The doctors from St.Marys(in waterbury) sent me to Yale New Haven Hospital.In the ambulance I had passed out and my grandmother was devastated.She was as scared as me.I spent a week and half in Yale at first they thought I had cancer so they took a bone marrow sample from me and the results came back as Alastic Anemia.I had went on for a couple of months with getting transfusions and going back and forth from Waterbury to Yale.It was hard for me and I was always thinking through my experience,will I make it untill the next day?They wanted to take samples of blood from all my sisters (I am 1 of 6 girls). But since we have a different fatheers and only my younger sister has the same.They tried her first.A week later they told us she was a match.I was nervous for her because how she’s so young.She’s only 14 and I only imagined what was going through her head.About March 1,they told us our procedure will be done shortly.My sister and I prayed everday.We were terrified.I just kept on hoping everything will go well.They admitted me in the hospital on March 17,2005, i got served chemo therapy for 4 days.All i could think about was my sister the whole time.When the day came for our procedure (March 23)i remeber asking her if she was sure about this,and she told me “I would give you my heart if you needed it”.At that moment we both started to cry.It was very emotional for.But i was grateful.Now it’s October 21,2005 and i am doing as well as can be expected even though i kbow i have more to come my way i can say i am a survivor.I was blessed that my sister was a perfect match.Today i am attending school again,and doing everything like i used to.I am very grateful….everyone that has been diagnosed with Aplastic Anemia at a young age god bless you.I believe i will be in full recovery one day…and everything will be back to normal.


ID: 547

Member: Beth Pugh Gomez

Email: gomez_bailey@yahoo.com

Diagnosis: APlastic Anemia

Date: 04/1997

Age:

Remission: True

Story: I was 19 years old and thought I was untouchable. I had came down with the flu and could not eat for 1 1/2 weeks. I went to the dr and he gave me med for my sore throat. I started feeling better but within a day or 2 I started my period. I was bleeding abnormally and thought my body was going through a change or something. This lasted 2 weeks. After the first week i began getting week, sick at my stomach because nothing tasted right, and seeing bruises from basically nothing. I went back to the dr on that friday and he gave me a shot for the uneasy stomach did blood work and let me go. At the time my counts were abnormally low but i was not informed of that. The following week i had been to my sisters and had gotten worse, she was the only one who knew how bad i really felt. I returned home on Thursday and on Friday was so sick i could barely get out of bed. My mom took me to the dr again and they did more blood work and sent me home. I ended up in the hospital at 12:00 on good friday with 3% of my blood a platlet count of 2000 and very sick. They thought the tests were wrong. They first thought i had leu and then later confirmed it was aplatic anemia. I went through neupogen shots transfusions and tons of platlets, but nothing would help. They put me on a high dose of cyclosporen and atg. They tested my brother and sister neither of which was a match so they put me on the list and within days had 2 matches. They were not ready to transplant though so they tried a serum from a horses bones. Four days i underwent this chemotherapy and stayed on all the other meds. Times were reall hard and scary but i had faith and prayed to god everyday. Eventually the dr appointments became less and less. They finally decided to take me off all my meds and see what would happen. It was a monday when they stopped everthing I went to the Dr everyday and had my counts checked and they continued to drop throughout the week the dr said he would give me until monday and then he would wait no longer for the transplant. I prayed all weekend and we were all scared to death. Needless to say I have been in remission for 8 years now. Everyone looked at it as a miracle. My only advice to those with this disease is to stay strong and have faith in god. Your mental state is half the battle.


ID: 549

Member: Priestley

Email: priestleyedward.tiscali.fr

Diagnosis: severe aplastic anaemia

Date: April 1986

Age:

Remission: True

Story: U.K. Citizen living if France for last 13 years. Dignosis followed exposure to toxic chemicals. I have made a full recovery after refusing a transplant and treating myself after escaping the clutches of the medical profession and a long list of infection they gave me whilst in several hospitals in the UK. My condition was greatly complicated when I was infecte with hepatitis C through a transfusion in Sept. 1986. It took my platelets many yea to reciver to normal levels. Have investigated many cases every one of which followed exposure to drugs, chemicals or radiation and helped with compensdation in some cases. I received nothing but deliberate wrong treatment, physical and verbal abuse from the medical profession and have had nothing to do with them for years. See my website wwwmedicineandillness.com which blows apart all the lies and cover up on causes etc.


ID: 550

Member: Brian Christoe

Email: bschrist@hotmail.com

Diagnosis: Severe Aplastic Anemia

Date: Sept. 05

Age:

Remission: False

Story: Found out that my platlets were at 48,000 about half a year after my wedding, via routine bloodwork. Looking back the signs were there if anyone knew what to look for. My platelets kept dropping about 5,000 a month for a couple of months while I was tested for leukemia, HIV, liver disease, and anything else the doctors could think of. Diagnosed with Aplastic Anemia after the second bone marrow biopsy. Waited for 2 weeks to see if siblings matched my bone marrow, which they didn’t. Started and completed four 12 hour doses of ATG (horse). First treatment was horrible. Very high fever, chills, cramps, muscle pain, fatigue. Three following doses only got a nosebleed. Discharged from hospital. Began taking cyclosporine (550mg/day)and a prednisone taper (starting at 80mg/day). Four days later, prednisone gave me severe chest/abdominal pain and was admitted into the hospital. Now I’ve been taking cyclosporine for a week and I’m not taking prednisone anymore, and I’m waiting to see if anything happens.


ID: 558

Member: Helene T

Email: helene@tpg.com.au

Diagnosis: aplastic anemia ..my daughter

Date: 17.10.1999

Age:

Remission: False

Story: She had AA snce she 10yo,Platelets #35-50.000 and she had only bruising ,tiredness.heavy perods..otherwise she is very healthy ,She was under Royal children hospital in Melbourne for the last 6years with no Rx.needed. She had done a fund raising for BMMR’s awarenes with Dr Walter.2 days before she had her admission ,then their group had raised a very good awareness and #28.000ad for BMMR. She is a selective patient for her first Rx with ATG on 27 /9/05 and she had very bad reaction !!!she went into shock with her BP 55/25,she end up n ICU for 2 days..But she was a very good fighter as she always and will be.She went through her Rx for 7/7 in RCH then 6/12 Cycloporin (until now 6weeks )without a complication..we need to wait for 3/12 to see the changes in her blood tests.We pray for her and we fight with her ,she is an A-A+ student ..and she will do her VCE in 2years due to her AA..We love to hear from you more Re:Treatment for AA (diet,exercses,alternative medicines..).. Helene T./ the Mum


ID: 559

Member: Saiwash

Email: bethangalliers@talk21.com

Diagnosis: aplastic anaemia ? Fanconi aneamia

Date: August 05

Age:

Remission: True

Story: Saiwash is my 4 year old stepson who lives in Afghanistan. He first became ill in August 2005 and was treated for ITP. At the end of August he shot a high temperature and started a violent nose bleed that took abotu 4 days to come under control. His father had just come back to the UK at that point and we found out that there were no facilties in Afghanistan for him to have a bone marrow biopsy. His grandparents took him to a hospital in Pakistan where he had a bone marrow biopsy. The results that have come back show that he has a hypo plastic bone marrow and that he has AA or possibly Fanconi anaemia. The treatment he has been put on is adrogen therapy with a recommendation for a bone marrow transplant. Being so far away from him has been very frustrating and although the doctors back in Afghanistan are caring for him as much as possible they are not specialists. The more I read about the condition the more concerned I am about the treatment he is receiving. My husband is now in Afghanistan with Saiwash and arranging to take him to a hospital in India for advice and also for Saiwash’s 6 year old sister to be tested as a potential donor. (november 05) It all feels very frightening and I just want to get on a plane and bring the children to the Uk where at least we know treatment is available but it could take some time to get visas sorted out. We just need to know we have this time and then life will feel a little bit more manageable. Bethan


ID: 561

Member: celina hamm

Email: here2stay68@yahoo.com

Diagnosis: severe aplastic anemia

Date: 1987

Age:

Remission: True

Story: My story is earlier posted here just wanted to post other email address:Old is h2sale@aol.com;new is here2stay68@yahoo.com


ID: 580

Member: Darlene

Email: kenharris1@bellsouth.net

Diagnosis: Aplastice Anemia

Date: Jan 2005

Age:

Remission: False

Story: My daughter in law, Amy, was 25 years old when she got diagnosed with Asplastic Anemia. She was petite and maybe weighed 100 pounds, and she has 2 young children. During her treatment she had major complications and they had to stop the treatment for a few days before completing. While she was getting her treatment her abdomin blew up like she was pregnant, and overall since then she gained a tremendous amount of weight, and you would hardly recognize her. It has been over 6 months from her treatment and her blood counts are remaining stable at this time, but she has been experiencing a horrible side effect. She has extreme pain in her legs and it is spreading to her arm, she is constantly having to spend time in the hospital to try and control the pain, she is now crippled to a wheelchair, and is very depressed and fatiqued and spends most of her time in bed. The doctors are unsure of what is causing this. Has anyone else gone through this side effect? Please contact me A.S.A.P., we need to know if there is anything to help her and why this is happening. Also, she is having major financial problems, she didn’t have health insurance and medicaid picked up the first 6 months of treatment with a $30K deductible and then dropped her coverage. Her medical bills are now over $60K and she is having a hard time trying to get proper treatment. Does anyone have a solution to this problem? Does anyone have any suggestions for her depression? If you respond please note, re: aplastic anemia, because I won’t open unknown e-mails. We would greatly appreciate any help or responses in regards to these issues. God Bless.


ID: 1335

Member: Mohan

Email:

Diagnosis: Dx 01/08

Date: 01/08

Age: 10

Remission: False

Story: Mohan passed away 4 months post diagnosis. He was on supportive therapy and had ATG planned for the next month when he passed away due to bleeding.


ID: 1336

Member: Pradeep

Email: pradeepkumar_am@yahoo.com

Diagnosis: DX 02/05

Date: 02/05

Age: 25

Remission: False

Story: Received ATG in March 05 and achieved remission. Was in remission for a year and then relapsed again. Transfusion dependent now.


ID: 1337

Member: Rob Rosenberg

Email: andreakayrose@yahoo.com

Diagnosis: DX SAA 9/05 ATG/cyclo TCM

Date: 9/05

Age: 58

Remission: False

Story: I was diagnosed in September, had ATG in October after a high fever, plummeting counts, started cyclosporine then as well. I began treatment with Chinese practitioners in February–herbs, acupuncture, and Qi Gong. Counts began to climb in March. In April I went off the cyclo and platelets dropped, but bottomed out at 11 and then climbed, so I did not go back on the cyclo. Last rbc tx was February 2006, last platelet tx July 2006. Current counts are 12 hgb, 27 platelets, 3 wbc. I feel good and work almost fulltime. I continue with my TCM regimen, also meditation, have blood tests quarterly.


ID: 1338

Member: Rob Rosenberg

Email: andreakayrose@yahoo.com

Diagnosis: DX SAA 9/05 ATG/cyclo TCM

Date: 9/05

Age: 58

Remission: False

Story: I was diagnosed in September, had ATG in October after a high fever, plummeting counts, started cyclosporine then as well. I began treatment with Chinese practitioners in February–herbs, acupuncture, and Qi Gong. Counts began to climb in March. In April I went off the cyclo and platelets dropped, but bottomed out at 11 and then climbed, so I did not go back on the cyclo. Last rbc tx was February 2006, last platelet tx July 2006. Current counts are 12 hgb, 27 platelets, 3 wbc. I feel good and work almost fulltime. I continue with my TCM regimen, also meditation, have blood tests quarterly.


ID: 1339

Member: Christine Davis writing for Matthew Joel Gonzalez

Email: chrisied1678@gmail.com

Diagnosis:

Date: February ’07

Age: 19

Remission: False

Story: My 19 year old brother was diagnosed with aplastic anemia in February ’07. It knocked the wind out the whole family, and I thought I was going to lose my best friend. He lived in Florida, and I lived in New York at the time, and had just given birth to my first son whom I named after my brother. When I got the phone call from my mother asking me how soon can I go down to florida for blood testing, I though it was a cruel, tasteless joke. When I had gotten down to Florida and I saw Matthew in the hospital bed I broke down. We hadn’t seen each other in two years and that wasn ‘t exactly the reunion I had in mind, especially when he was meeting his nephew for the first time. They had given him transfusion after transfusion and nothing was working. He needed a bone marrow transplant. They said they could only test people with an immediate blood line (mother, sister, father). Our father hasn’t been in our lives since we were 5, and my mother wasn’t a match. Miraculously, I was his perfect match. During that time we were waiting for the transplant, I saw my brother in pain, unable to bathe himself, stuck in a small, cold room, hooked up to all types of machines, unable to eat, lose his hair, I saw my brother cry out of pain and frustration and confusion about why this was happening to him. We had no answers. But through all this he stayed positive. Through the down times he tried his best to smile and laugh. He kept his sense of humor. He stayed humble. He was always polite despite the discomfort he was experiencing. In March they harvested the bone marrow from my back and gave it to my brother as a transfusion. Success! He quickly got better right before our eyes. Two weeks later, they lt him come home. Just two monthsago, they took him off medication and he started his regular immunizations. Today, he works, goes to school, and has a girlfriend. The way every 19 year should live. Matthew Joel is a very lucky and blessed young man. And I am proud to call him my brother, my best freind, and my hero.


ID: 1347

Member: Martin

Email: vanrensburg.sharon@gmail.com

Diagnosis: VSAA

Date: 15 July 2008

Age: 10

Remission: False

Story: Martin was diagnosed with Very Severe Aplastic Anaemia on 15 July 2008. He has no previous medical history. We live in South Africa. He used a head lice shampoo called GAMBEX (R) for over 12 months a few times each month due to persistent lice outbreaks in the local school. The chemical in this shampoo is known in the US as LINDANE. It is Gamma-Benzene Hexachloride. He presented with severe petechia on his legs, torso and arms. His Platelet count was 4, Hb 71 and white cell count 2.1. He had significant bruising on his body. His counts continued to drop, particularly his neutrophils which have been at zero for weeks now. He was transfusion dependent until he received a bone marrow transplant from his brother who was a perfect match. He is at Day +18 and his counts are slowly but steadily rising. Platelets 59, HB 106, WCC 1.6 and neutrophils of 0.8. Has anyone else acquired AA from exposure to head lice shampoo? This shampoo is banned in 52 countries around the world, but sold freely over the counter in South Africa.


ID: 1348

Member: Jenna Hunter

Email: jschloss@utk.edu

Diagnosis: starting second ATG-rabbit serum

Date: January 2008

Age: 22

Remission: False

Story: My story all began when I started to feel really tired and started bruising badly. I went in to see my doctor and did not think anything of it. My dad had cancer about eight years ago; but I never thought I would be diagnosed with anything more than anemia, and need to take some iron. When my counts came back they believed that I had leukemia, and I had to have several bone marrow biopsys. All of the biopsys came back clear and it was several months before they could diagnose me with aplastic anemia. Since being diagnosed my world has completely changed. I was working, attending college, and planning a wedding. I had to finish my classes through e-mail,and haven’t worked since January. I had the first ATG horse serum in June and it is now October and there had been no response. I will now go back into the hospital for the second treatment. I pray this works, and pray the best for all of you suffering with the illness. This disease is very hard to deal with, and I respect anybody who has had to suffer through the ultimate vagueness of it all. My husband and family have been my source of strength, and I hope everyone else has someone they too can depend on.


ID: 1349

Member: Aurora

Email: aurorabunny@shaw.ca

Diagnosis:

Date: Febuary 16 2007

Age: 12

Remission: False

Story: 2 Years ago on Febuary 16 07 I was Diagnosed with SAA and startded ATG treatment in April I had my Port put in on easter WOW and then soon later started up treatment well it didnt work that summer I went to a cancer camp its so awesome!! that september we started round 2 of ATG that didnt work either the next Febuary on the annivarery of my diagnosis I went to florda for my childrens wish that summer they took me off of all medications and I went to Ontario with my family to the Lake and in september on the 23 I had My BMT my day 100 is January 1st 09 please email me at aurorabunny@shaw.ca or visit my site at www.caringbridge.org/visit/aurora


ID: 1350

Member: Scott Phillips

Email: nixthelatter@gmail.com

Diagnosis:

Date: 1997

Age: 22

Remission: False

Story: I was diagnosed with Severe Aplastic Anemia after battling liver failure for a year. My liver went in to failure for an unknown reason in 2005 when I was 11 and for a year we struggled to find a donor as I my liver slowly died. I was at 10% liver function when a donor was found but miraculously my liver began to regenerate on it’s own! I was sent home with instruction to continue blood work weekly at Children’s Hospital in DC. Two weeks into my recovery my blood counts began to drop dramatically. I was immediately admitted back into children’s hospital where I was diagnosed with severe APLASTIC ANEMIA. The doctors said that the liver failure was related, that sometimes the liver is attacked first. I went on to spend another painful year in the hospital surviving off of experimental drugs like “Pixie” a daily injection and platelet and redcell transfusions as well as cyclosporne. My platelets had dropped to 4,000 and everything else equally low but none of my 4 sibblings were matches. My Father would have been a prospective match but he passed away a year before I grew ill. I grew so ill at one point I went into septic shock and was comatose for 3 days from a hangnail infection (from biting my nails!) Doctors could not find a good match and I was getting worse and worse, non responsive to immune supression therapy so I was given the “Make-A-Wish Foundation” wish. I was prepared to die…. A last resort donor was found, a 5 1/2 out of 6 match but it was the best we could find so we began to prepare for the transplant. Before my radiation began another bonemarrow biopsy was done….somehow my counts were on the rise so the transplant was called off. A week later I was still improving and was sent home. I continued bloodwork only to improve more and more everytime. It is now 11 years later and my counts are still holding up accept for my platelets. My platelets stopped improving at about 70,000 for 7 or 8 years and I was told that they will probably never get better but just this month a well over due CBC showed my platelets were 104,000! I live a normal life but I am told that leukemia is a possible threat or a relapse. I stay strong everyday and hope that it never comes back. If anyone else has gone in remission for as long as I have without relapse let me know…I have never met anyone or heard first hand much about this disease so this site was an amazing find. THanx everyone and good luck….and don’t ever assume that you can’t defy the odds because I’ve been defying everything Doctors have ever told my since I was diagnosed.


ID: 1351

Member: Scott Phillips

Email:

Diagnosis:

Date:

Age: 22

Remission: False

Story: I wrote before and wanted to give my email incase anyone wanted to respond to my story…or if anyone else had been in remission as long as I have without relapsing…email me at nixthelatter@gmail.com


ID: 1352

Member: Tanisha

Email: tmccants_07@yahoo.com

Diagnosis: ATG 2X Response

Date: 11/1999

Age: 28

Remission: False

Story: Hello everyone, I was diagnosed with AA when I was 18yrs old. It started when I went off to college after high school. I went home to visit for Thanksgiving Holidays and went to a regular follow up appt. If I can remember correctly, I remember getting my blood drawn at a hospital. The doctor came in and stated that I had to be hospitalized due to my platelets being very low (don’t remember how low). At that time I just thought that I had to be in the hospital for a couple of days and everything would be back to normal. Little did I know that I was on my way to dealing with something very horrible. I stayed in the hospital for about 2 weeks. I had my spleen removed in hopes of my blood counts returning to normal. My counts went up some but not to normal. After that I was cleared to return to school for Spring 2000. One day I was in my dorm room and my nose started to bleed. I tilted my head back (like i did when i was a kid) and applied pressure for my nose to stop bleeding. After about 15 minutes i noticed my nose would not stop bleeding I rushed to the health center. The nurse finally got my nose to stop bleeding. At the time i did not pay attention to all of these signals that something was wrong. I would get short of breath very easily and I started getting red spots on my legs from shaving once. One incident that really scared me was when I was on my cycle I passed a huge blood clot that looked abnormal. One day I went to my doctor appt. and he explained to my that it may be best for me to withdraw from school and return home with my family. He stated to me that I will need to have a plasmapheresis. I was unsure of what it was but at the time I still did not think it was anything that serious going on. I withdrew from school and was admitted into the hospital. Unfortunately I did not have the plasmapheresis done b/c my blood counts had changed and the doctors felt that it was no need. I was treated with ATGAM twice. A bone marrow transplant was not an option due to not having a match, which is why I underwent ATGAM treatment twice. The first time there was no response. I was on high dosage of prednisone which caused me to have thinning skin with horrible stretch marks. I weighed 116 and shot up to 150 very fast. I had Type 1 diabetes and high blood pressure. I also had a moon shaped face. I also was on cyclosporine which caused hair to grow on my face and back. After being treated with ATGAM my dosage of prednisone was tappered down which caused me to have painful joint pains in which I had to be hospitalized each time after receiving ATGAM due to these joint pains. I had pneumonia twice. Since then I have been in remission for about 6 going on 7 yrs. Since then I have graduated from college, married with a 1yr old daughter. I am currently attending grad school to receive my masters. I don’t know what i would have done without my family, friends, and doctors supporting me the whole while.