The Readers Digest Version of My Story
I was diagnosed with SAA in January of 2001 and after having my life saved by Dr. Jeff Kirshner, I entered into the world of experimental medicine. I was subjected to two rounds of Rabbit Serum, growth hormones, septicemia and more meds than I could count. Then in August of 2001, I finally listened to my wife who is an RN and has taught herself about alternative healing methods. I have been following a regimen that is considered an alternative to modern medical treatments.
The alternative approach I am now following appears to be working for me and a few others and I recommend that you at least consider this less radical approach before you subject your body to chemotherapy, ATG, Bone Marrow Transplants and other such invasive techniques.
I was admittedly very skeptical about the alternative approach and did the ATG twice, had serum sickness that almost killed me and have experienced two serious blood infections that had my temperature over 105 degrees. I was on more meds that I could count including cyclosporine, steroids, folic acid, and about ten more before I came to my senses.
As of September 8, 2002, I am golfing 5-6 days per week, visiting with my grandchild, walking, talking and taking out the trash. I have not had a Red Blood Cell Transfusion since May 24 and have not needed a platelet transfusion since July 23. At this same time last year, 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 true healing for me 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 with a daily sauna and colon cleansing routine, eat only organically grown vegetables, lots of rice, beans and lettuces, drink only pure spring water, exercise 45-60 minutes per day and get at least 1-2 hours of sunshine every day. I also take multivitamins, B12, Co-Q10, Vitamin E, Magnasorb, Essential Oils, Glutathione and a series of allergy and Alpha Lymphatic Factor shots developed specifically for me by the Environmental Health Center in Dallas, Texas. It may sound strange to you, but this approach has saved my life and restored me to about 85% of my formal self in about a year after the more popular treatment protocols failed.
January 10, 2019 Comment
- I am in the process of updating the site.
- This is the story as it existed before I cancelled aplasticcentral.com. (The site is now archived)
- Here is a link to a live journal blog I used from 2006- 2011 https://aplastic.livejournal.com/
April 18, 2009 Update
If you are new to my journal, please read as much of this page as you want for the proper historical perspective and especially if you are a patient to appreciate the ups and downs of dealing with AA/MDS.
The picture on the left is me with “My Girls” at one of my favorite family times at the beach. Michelle had graduated from college after a long battle of her own, Melanie was just starting college and Melissa was about to graduate from High School. The proud father of three girls and lucky enough to have a loving wife who has weathered many a storm since our marriage in December of 1969. In January of 2001, I was given six months to live and at times over the next few months I was not sure I even wanted to stick around given my quality of life at the time as evidenced by the picture in the middle taken shortly after entering the hospital for ATG treatment. The good news is that unlike so many others, I survived to lead a normal life and that is me over three years later in June of 2004.
As of April 18, 2009, I am semi-retired with six grandchildren and most days could not ask for a better life. My body and I have adapted to the “normal” life of someone with Aplastic Anemia… Although I will probably never be “cured”, I have learned to deal with the low blood counts, fatigue and other side effects of the illness.
None of that would have been possible without the loving support of my family and many others. My journal which follows remains in its original unedited form as that is the best way to capture my journey. I also wrote a book about the experience which can be previewed for FREE here.
This page is a personal journal of my struggle with Aplastic Anemia. It is dedicated to my wife and family in hopes that I will be here for many years to come and we will share what we learn with others. It will appear redundant and disorganized at times but that is a reflection of both my frustrations and my decision to leave it in its original format.
Much of this page and connections to it will be of a personal nature so if you are here looking for facts please go to the Aplastic Anemia MDS International Foundation, Inc. I transcribed this so that those of you who are newbies to the AA battle may pick up some tips and get an idea of what to expect.
And here is the original full unabridged version of my story
The Details of My Battle with Aplastic Anemia
(In its original and unedited form with apologies to anyone I may have been angry with)
Until late fall of 2000, I was a pretty normal (unless you ask my family), 52 year old. I worked hard in the computer and internet industry, played golf, guitar, did lots of odd jobs around the house (amateur carpenter and handyman) and pretty much enjoyed life to the fullest. Beginning in late 2000 I began to feel tired all the time and by Christmas time walking up a flight of 5 steps left me light headed and weak. I was “yellow” according to family members and was bruising much more often than was normal.
On January 8, 2001 I went to see my General Practitioner and was referred to a hematologist. The blood specialist immediately checked me into the emergency room where I was first confronted with the ugly news that I had a Platelet count of less than 7,000. Normal platelet count is between 100,000 and 300,000. The oncologist performed my first bone marrow biopsy (drills into the marrow and extracts a sample for analysis) and made a preliminary diagnosis of Myelodysplastic Syndrome (MDS) and sent me to Strong Memorial Hospital.
After a couple more visits and biopsies, the diagnosis was changed to Aplastic Anemia. They are very closely related and the treatment protocol is the same, so it really doesn’t matter much what they call this ugly thing that I have.
On February 8, 2001, I checked into Strong for my initial treatment of designed to suppress my immune system. Now I am the Rabbit Man! According to an article distributed by Aplastic Anemia & MDS International Foundation, “The generally accepted thinking about aplastic anemia is that the patient’s immune system is reacting against the bone marrow, interfering with its ability to make blood cells. Immunosuppressive drugs are believed to counter this problem by reducing the immune response, allowing the bone marrow to once again make blood cells.”
June of 2000
Went to see GP for physical feeling weak
No specific problems noticed but did do a CBC (Complete Blood Count)
Wrote it off to getting older and continued normal schedule
November and December of 2000
Working a very aggressive schedule on a project and kept getting weaker
Attributed to heavy schedule and ignored symptoms
Bruising, small blood spots, extreme fatigue and shortness of breath
Dec 25, 2001 –
Relatives noticed Jaundice and I couldn’t walk up five steps without grabbing the wall!
Duh – Something must be wrong!
January 3, 2001
After working long days on project going up and down stairs with boxes
Mini seizure in hotel room – Cramps in legs and right side went numb
Finished out week and again went to see GP
January 8, 2001
Wife and daughter finally convinced me to go back to GP who recognized extreme symptoms and referred to Hematologist, Dr. Jeffrey Kirshner of Hematology Oncology Associates of Central New York. They mean it when they say “Treating Each Life with Compassion.”
January 9, 2001
Sent to emergency room at Community General Hospital Syracuse
CBC discovered extremely low RBC Red Blood Cells, WBC (White Blood Cells) and Platelets 3000 vs. normal of 150,000 – 400,000
Received my first platelet transfusion and 2 units of blood – Was up most of the night waiting for the transfusions to be driven in from Rochester in the middle of a blizzard. Did not arrive until 2:00 AM
January 10, 2001
First Bone Marrow Biopsy resulted in Preliminary Diagnosis of Myelodysplasia Refractory Anemia and biopsy results were also forwarded to Strong Memorial Hospital in Rochester for further analysis. Admitted to CGH as Neutropenic (Low Immune System and highly susceptible to disease)
While in CGH, it was discovered I had a “Subdural Hematoma (small bleed to the brain) during my seizure so had MRI, CT Scans and EKG. Everything was pretty much normal except for headaches caused by blood behind my eyes from the seizure.
January 15, 2001
Released from CGH and was told to take it very easy and would be seeing Hematologist twice a week for CBC. Was also set up for first appointment in Rochester for further testing and diagnosis
Brother and sister were alerted as possible sibling donors for an anticipated bone marrow transplant. They both went to local clinics and quickly got results back to Hematologist but unfortunately they were determined not to be a match.
January 17, 2001
Initial visit at Hematologist office for CBC workup and meet with Dr. Jeff Kirshner and Nurse Practitioner, Kathy Klinger. Some doubt about initial diagnosis and will go to Rochester next week for additional testing. Also had HLA typing done for comparison with siblings and submission to Bone Marrow Database. Prescribed Prednisone (Steroid) to build up strength.
January 25, 2001
Initial meeting with Rochester Bone Marrow Transplant Team
Dr. Jeff Lancet, NP Lisa Weldon, Nurse Coordinator Darrin (since left the team), Mike Ellis Social Worker and Mary, Financial Coordinator. Answered a lot of questions and indicated that a bone marrow transplant was high risk. They will recommend alternative treatments prior to a transplant if I do not have a sibling match (which I did not). Another biopsy and further analysis switched diagnosis to Severe Aplastic Anemia. SAA means my bone marrow has stopped producing blood cells properly and they are being released into my blood stream. My T cells are destroying the stem cells before they can mature and be released into the blood. My bone marrow is hypo plastic, which means it contains a low number of flood forming stem cells. In MDS, the cells are being produced but they are malformed. The treatment protocol for both is very similar, so the disease is not as important as the treatment strategy. Will schedule me for admission to Strong Memorial within the next two weeks for initial Immuno-Suppressant Therapy. This treatment is designed to suppress the T Cells from destroying my healthy cells, which are being allowed to enter the blood stream. Alternative treatments are Antithymocyte Globulin Therapy ATG (Horse Serum) and Anti-Human Interleukin ALG (Rabbit Serum)
February 6, 2001
Admitted to 6th floor of Strong Memorial and had a pretty bad initial experience being put in semi-private room with someone who had the TV on all night and did not sleep well. Moved around to 2 other rooms before landing in a private room because of anticipated neutropenia. While neutropenic, I am highly susceptible to disease and must be somewhat isolated.
Admitting Doctor Abboud said they had decided on ALG (Rabbit) and would get some preliminary work done in the next few days and then start the ALG.
February 7, 2001
Admitting nurse (Diane) gave me a chart explaining how the blood cells are produced and the difference between stem cells, T cells, etc. Started on pre meds of Solumedrol, Celebrex, Protonic, Folic Acid, Diflucan and Cyclosporine.
Started on growth agents of EPO to stimulate growth of red blood cells and G-CSF for White Blood Cells and Platelets.
Dr. Abboud explained my diagnosis more thoroughly and also explained that I would probably never be 100% of my old self. Best we could hope for with this strategy was to put the disease into remission and maybe be 75% of my old self. I have a chronic disease that is not going to go away! My T cells (Lymphoblast) are attacking my WBC’s, RBC’s and Platelets because they are malformed.
The therapy is designed to suppress this activity and if successful will reduce my dependence on transfusions. (Currently getting platelets every 5-7 days and blood every 10-14 days).
There is a strong chance that I will have serum sickness of fevers, tremors, rashes, etc. so they will give me many prophylactic drugs designed to reduce the serum sickness. Next I am given the growth stimulants mentioned earlier to increase my counts prior to the ALG. I will also need a catheter (Hickman Triple Port) and a de-sensitization process to determine allergies.
ANC 1.1 – Reliable measure of body’s susceptibility to infection – Key neutropenic indicator if below 1.0 I am considered Neutropenic
February 8, 2001
Catheter inserted and growth factors received. The catheter sucks but it beats the heck out of IV’s!
February 9, 2001
Immunologists did testing for penicillin allergies, which proved to be negative
Good to go for the ALG
First dose of rabbit serum about 6:00 PM with nurse Jen
First infusion was six hours – Minor reaction near end of the infusion of flushed face
February 10, 2001
Second dose of ALG
Officially Neutropenic with ANC at .8
No fruits, salads or fresh vegetables. Wear mask if leave room. Visitors wear masks.
2 units of blood and 5 units of platelets
No negative reaction to ALG
February 11, 2001
Day 3 of ALG Platelets and Neutrophil low so had more platelets and blood
Blood Pressure going up 160/100
Pulse down to 43
Shortness of Breath
Stopped Infusion redid premeds and finished transfusion
Halcyon for sleep at 1:30
Did 4 loops around floor for exercise
February 12, 2001
Final day of ALG
More platelets given
5 loops and mild upper body exercise
From February 13- 24th
Pretty uneventful just monitoring counts and watching for serum sickness. Doing lots of walking and exercising of my arms – lost total motion in one arm during serum sickness.
February 25 – March 3
Developed severe serum sickness with fever, heart palpitations and edema (swelling of joints). Knocked me on my a__. I was pretty well out of it for several days and could not even get out of bed. When I finally recovered, I lost the use of my right arm. Could not eve lift it off the bed and was pretty frightened that it would stay that way. Also could not move my legs and had to use a walker when I finally did manage to get out of bed. Learned how to use urinal and bed pan! Working with physical therapist slowly got the use of my legs and arm back – Did range of motion exercises to avoid locked shoulder.
The ALG treatment essentially wiped out my immune system and I was hospitalized for 4 weeks while my body reacted to the serum (“serum sickness”) and then began rebuilding itself. During the hospitalization I was fitted with a triple lumen Hickman catheter (You will need free adobe acrobat to view the catheter – a very ugly thing that is directly attached to my aorta but saves being poked for an IV every time I need blood drawn). Having never been hospitalized before this was an eye opening experience. It’s very different being the one in the bed vs. visiting someone else.
The Hickman procedure was referred to as minor surgery and in fact was conducted under local anesthesia but I certainly didn’t enjoy it very much. After some minor prepping, they shot some lidocaine into my skin in my chest and then before I knew it they were poking around my heart and sticking this long plastic tube in me. See the picture above so you’re not surprised like I was!
One day after getting the Hickman, I began the ALG treatments and everything appeared to be going fine until about 4-5 days after the treatments had been completed. I then contracted the serum sickness and the next 2 weeks was awful! Thank God I had my wife, daughters and friends around. The caregivers at Strong were fantastic and my core group has been great. Here’s my public thanks to Doctors, Mike E. Lucy, Kathy, Sharon and all the others that have helped me through the initial stages. Thanks gang! They helped make it bearable and I realized how important it was to have family, friends and caretakers.
The serum sickness consisted of fevers, joint pain, insomnia and some other generally ugly side effects. The most debilitating side effect was the loss of feeling in my right arm and shoulder which still remains to some extent 3 months later. I was on a full regimen of “prophylactic medication” designed to prevent more serious effects. I tracked my blood cell counts from the beginning and continue to do so today. Here is my spreadsheet of the counts. There are three worksheets. First one is a rating of the transplant centers, second is a graph showing my troughs and third is my actual counts. Platelets only last me about a week. That essentially says I am not making them myself at all YET!
Sue (my wife) just commented that it is hard for us to remember what life was like before we started tracking my platelets. I didn’t even know what a platelet was five months ago and now I think about them every day. I now take Cyclosporine twice a day (100 mg each if you are interested) but have cut down to only one other med (Diflucan, an anti-fungal). I also get a growth factor shot (neuritis) once a day and of course have to “flush my ports” every day with saline. Anyone who has read this far and has yet to experience the treatment, feel free to email or post and I will gladly supply additional details.
March 9, 2001
Pretty much forced a discharge to beat another storm and got home about 7:00 March 9th in a much weakened state. Will have home care with St. Joseph’s Home Care starting Monday. They will draw blood every Monday and Wednesday and arrange for transfusions at CGH co-coordinating with Kirshner and Lancets offices. Pretty much settled into a routine of platelets every week and blood every two weeks waiting to see if the ALG will work. Need to give it 3-4 months.
March 15, 2001
Follow up visit with Dr. Lancet team – Really want this to work as transplant for someone my age and size is high risk and was assured that the number of transplants I receive should not be an issue (I had read that too many transfusions can be problematic as my body will build up antibodies to the foreign entities). Will transfuse with platelets if count is below 10 and blood if Hematocrits are below 25. Back to Syracuse and continue with home care treatment.
April 2, 2001
Discontinued home care and felt well enough to start back to a semi-normal work schedule. Traveled to Albany and Batavia and worked in Syracuse 2-3 days per week. Was usually pretty strong in the AM but by 3:00 would start to wear down.
April 19, 2001
Lancet follow up. No real indications that anything has worked yet. Will give it another month and then consider a second treatment – may try the horse serum this time.
May 17, 2001
Lancet follow up. Will schedule re-admission to Strong near the end of the month.
May 18, 2001 DX +118 days ALG/Cyclo + 95 days
Had my monthly visit to Strong Memorial Hospital in Rochester, NY. It has now been over 3 months since my Rabbit Serum and they don’t think that plus the Cyclosporine has worked as planned so are seriously considering a Horse Serum treatment in the next 1-3 weeks. I’m packing my bags. Oh goodie – Hospital Food and no sleep again!
May 20, 2001 DX + 120 days ALG/Cyclo + 97 days – Increase Cyclo to 200 Mg twice a day.
Possible Positive – Platelets were at 20 and HCT at 32 on Thursday. Waiting for Monday to see confirmation. Also some discussion about Liver Enzymes bilirubin my ferine level was 2500 – normal is 250 – what to do? I a jaundiced and Sue says it is because I have too much iron and my system is not properly breaking down and disposing of dead red blood cells.
Fatigue is still definitely an issue. I attempted to mow a flat front lawn which used to seem like no big deal and was actually looking forward to it as a way to get some exercise. After about 1/4 of what I would have used to do, I was flat out exhausted and had all I could do to get the mower to a safe place and me into a chair. Took me 30 minutes to restore my breathing back to normal!
May 28th, 2001
Admitted to Strong for ATG. Pretest for ATG OK
Began first dose around 5:00 and had severe reaction of hives to the horse serum. Decided to stop for tonight and try again in morning.
May 29, 2001
Trying ATG again with a heavy (750 MG) dose of Solumedrol. Within an hour had several hives again and decision was made to drop the ATG and try ALG again. Will start tomorrow AM.
May 30, 2001
10:00 AM giving ALG at a very slow rate (55 CC’s per hour over ten hours).
12:00 AM – So far so good!
7:30 PM Full infusion completed- no issues
Had 750 Mg of Solumedrol Steroid
Meds for ALG June 30
Solumedrol IV – Steroid
Diflucan Pill – Anti Fungal
Tylenol – Pain/Prophylactic
Cyclosporine – Immuno-suppressant
Magnesium – Keep Magnesium count up
Cymedadine – Antihistamine
Prilosec – Anti Nausea
May 31, 2001
Platelet counts of 6, so had platelets at 9:00
Rabbit started at 1:30 at 60/hour – seems ok so far
Rabbit went until about 7:30 and no issues. Went out to dinner and felt pretty good.
Took an IV shot of divan for anxiety and sleep – did the trick
Also had back pane and took two Tylenol.
June 1, 2001
Heading into my 6th month fighting this battle.
Awakened at 4:30 for blood draw (pretty typical stuff I forget to mention early – don’t expect to get any sleep while in the hospital!)
Had some potassium IV and then Solumedrol
Rabbit started about 10:30 and was done (last dose for this time) and was done about 6:30. Went out to dinner and felt pretty weak and but that it part of the Immunosuppressant side effect.
WBC 7.6 (thanks to GSF)
RBC 2.9 Low
Hematocrits 27 (Low)
Platelets 17 (Low Low)
June 3, 2001
Discharged with reasonable counts. Waiting to see if I get serum sickness again or not. Actually feel pretty good and am hoping maybe no serious side effects this time. Loaded up on all kinds of new meds – Magnesium, K-Door potassium and Capri. Take more pills in one day than I ever took in my life!
June 7, 2001
Checkup and CBC – counts are low but going to try to get through the week-end with no TX.
June 12, 2001
Low “Crits” around 22 – Go for Blood TX – Uneventful but a whole day sitting in a room. (Don’t read this if you are easily offended – Diarrhea big time last night – no apparent cause? Insomnia is also obviously a problem since I am usually updating the site till 2:00 AM. Supposed to take a GSF shot tonight and forgot – will do in the AM! Lucy says WBC are low. Want to know if Cytoxan is a good idea or not – Hopkins swears by it. NIGH says it killed 3 people in 3 months. This is like Russian roulette with people’s lives! Will talk to Lucy on Thursday I guess. Had problems with all 3 ports yesterday and today – Would not draw properly but are working ok now.
June 14, 2001
Weekly trek to Strong for shots and CBC. Good news is that platelets held at 14,000 so have held for 12 days – longest on record – cautious optimism. 3 shots neology, eloign and GSF. Also used some “TPA” to loosen clogged port and advised to flush twice a day. Started on Flagil for Diarrhea/CDEF even though didn’t have clear results back yet. Discussed Cytoxan with Lucy – It is in their mix of options, but want to give the ALG at least 3 months first. Then will consider Cytoxan or MUD. At this point I’m going to have to trust they are on the right path as it seems consistent with months of what I have read. Should be dropping Prednisone more aggressively – Off within 5 – 7 days.
Moving the SSA disability effort along. Expect to hear by September retro to July for $1600/month. Would definitely take some of the financial pressure off. Also a good talk with Art re helping out part time if able and update from John B’s venture.
Mark Clark to host a benefit golf tournament in August and chamber will announce and back. Need to decide what we want and most appropriate way to handle.
June 15, 2001
Had a good active day – virtually no side effects other than the normal 3:00 let down and the “prednisone shakes’. Really comical to watch I work a mouse. Melanie and Fred has a disastrous flight into Syracuse. Finals arrival after bus trip from Binghamton was 3:00 AM but still great to have them with us!
June 16, 2001
Now into day # 13 with no platelet XF – dare I get optimistic?? They were only at 14 ,but that beats crashing! – In retrospect – IT WAS A FLUKE!
Had a very nice day with the whole family in attendance capped with a bubble tying party and grilled chicken with trimmings on my new grill. Thanks gang and especially to Richard and Michelle for assembly. It works great. FINALLY seem to have the pool working – I get frustrated when I am unable to do what used to be simple things like turning a couple of pipe wrenches against each other. I also have limited upper body and arm strength. Need to work on that and also lose weight!!! Prednisone make me eat everything in sight! Tapering off Prednisone – completely free by end of next week at the latest. Woke up with severe leg cramps about 2:00 – MSL introduced early father’s day present of foot massage that really helped. It was a great day having the whole family together and tomorrow we celebrate father’s day with the Burghardt’s at our first official pool party (did some swimming and ate out on the picnic table night before last – was fun!
June 18, 2001
Like the song says- Some Days are Diamonds, Some Days are Stones –
I am not going to sit around and let this thing get me! I will become my own one man research team and figure out what the heck can be done about this thing – Off I go!!!!!! Check out the book list.
June 25, 2001 – Up and down we go.
Good News – Got a date for the Golf Benefit – Aug 18th. After a couple of really good days with friends and just keeping up with things, I got some kind of infection and crashed again. Golly, gee whiz this is fun! I guess this is probably a milder form of the serum sickness. Visit to doc’s today showed platelets at 6k, WBC at 1.0 and crits at 24. Monday in for platelets, Tuesday for blood and now taking another new med for e-coli – Ceftriaxone. Feeling pretty good right now but really has been up and down for a few days. Sue and I did a lot of reading on chemical sensitivities, diet etc. and are going to change our eating to macrobiotic, low carb. Also started writing a more in depth article (it’s on my laptop in case I lose track of all this research) on all of this from a more factual point of view with research into immunology, the blood system, immunotherapy, multiple chemical sensitivities, environmental allergies, etc.
June 27, 2001 – Counts on Monday Platelets 6K, WBC 1.0, WBC 2.55, Crits 24.5
Study on patients who receive transplants. Personal observation = my age is definitely working against me. If I am going to have a transplant, I should request it pretty soon – I am now 6 months since formal diagnosis and have likely had AA for at least a year since I was getting progressively weaker over a long period of time. Still feeling pretty lousy even after BT and PT. I used to get a surge of energy after transfusion but not so the last 2x. I have received a total of 43 transfusions. I now struggle to lift 20 lbs. and I used to throw around 80 to 100 lbs. bags of FERTILIZER like they were nothing. This was a long time ago but I had at least 2 yrs. of continued exposure working in a fertilizer plant. NO mask. Breathed that stuff in all summer long. I wonder if others who worked in similar environments have AA. Was in for xf Monday and Tuesday. Tried to work a half day Wednesday and pretty much tanked about 2:00. Tomorrow off to Rochester for CBC and shots. That’s a pretty typical week!
June 28, 2001 – The Roller Coaster Ride Continues
After feeling absolutely lousy and discouraged yesterday, today was unbelievably good! Met with my NP Luci and we discussed what to do if the current treatment strategy does not work. She informed me that they were already considering me for a clinical trial and would be working to get me into a T Cell Depletion protocol as part of an unrelated transplant. The T cell depletion strategy greatly reduces the risk of GVD and improves the odds of survival to 75%. She pointed me to some information and promised to send more. We will be researching and updating over the next few days. We then worked with a customer and everything went like clockwork. I’m still at it and feeling almost normal. What gives with this called AA anyways?? Discovered some real secrets on how to research the illness. Back on vanco (takes 1.45 hrs. in the AM and same in PM vs Ceftriaxone which about 10 minutes. Oh well, it gives me time to update the web site.
July 9, 2001 – Platelet Reaction and Summary of Week
Spent almost every day this past week either in the home tonight or doctor’s office. Monday – Kirshner CBC – 5K platelets. Tuesday – get platelets. Wednesday – fourth of July party our house. Thursday – Hematocrits go for blood tomorrow. 23 Friday – Get blood – in at 11:00, out at 7:30 PM. This Monday – platelets 5K – get platelets oops – big time rash reaction – 50 mg of Benadryl and 2 hydrocortisone shots and NO PLATELETS – go back to Kirshner tomorrow! Felt pretty lousy all week. Even a short walk wiped me out. I am getting progressively weaker and can’t exercise to keep up my strength.
July 12, 2001 – Good News Day!
I received some very exciting news today after a thorough conversation with my care team at Strong Memorial Hospital in Rochester, NY. They are recommending me for an Unrelated Matched Donor (MUD) Bone Marrow Transplant preceded by a T cell depletion strategy that substantially reduces the risk of Graft vs. Host Disease (GVHD). Full details at the forum or you can subscribe to where I will be publishing lots of information about this, go to http://www.topica.com/lists/rabbitman/ click on join the list at the bottom left. My good friend, Ray spent the whole day with me in Rochester where I had CBC, cultures, Petabamine (anti -parasitic), the usual pre meds and Platelets. Also had my 3 shots for growth stimulation Neupogen, Epogen and GSF. Was very tired afterwards but excited about the potential transplant. Tentatively scheduled for T-Cell Depleted BMT starting on September 17th in Rochester.
July 31, 2001 – Aplastic Conference and Updates
We (Sue, Melissa and I) traveled to Des Moines, IA for nephew Chad and new wife Maggie wedding. It was great to see lots of family members that we had not seen in many years and to spend time after the wedding with Sue, Melissa, Marty, Heidi and Kevin. I was worn out for three days after two days with everyone. Rochester arranged for a blood and platelet transfusion on Wednesday, July 25 which bumped back up a bit so I could spend two long days at the conference. Completely ran out of gas on Sunday but now am home safe. Kirshner office today – counts about the same as always – fully expect to get platelets on Thursday….i.e. no change. I talked to many people at the conference about transplant and read new book by Dr. David Biro which really shook me up. The transplant alternative looks very scary!! I really don’t know what to do now. If I stay with the ATG/Cyclo and nothing happens I may be opting out of the transplant alternative whether I want to or not. If I go for the transplant I either die or go through hell with lots of serious side effects as a result. Need to look into the Hopkins Cytoxan program – last time they did not call me back – need to try again. It appears that the AA Foundation is very much against the Cytoxan concept.
August 8. 2001 – BMT, Chemical Sensitivity, Cytoxan and Where do I go From Here?
Had a good talk with caretakers at BMT in Rochester today. We (Sue and I) have been seriously discussing BMT strategy vs trying other alternatives. Reading 100 days and discussing BMT outcomes with others has me seriously second guessing the decision to go for a BMT. Survivability does not look promising and even if I survive the potential side effects sound worse than what I am experiencing now. SO…. we are going to hold off on the BMT till November and give the cyclosporine more time to work OR…. seriously investigating the chemical and environment illness alternative. Sue met with Dr. Sherry Rogers, a leading practitioner of EI and they are recommending a detoxification process at a center in Dallas. I have started the investigation process and will keep the journal up to date. Some new links at the links area if anyone is interested.
August 18, 2001 – ATG/Cyclosporine Officially a Failed Treatment Protocol for Me
I officially gave up on the toxic drug strategy earlier this week and have been devouring books and websites on alternative strategies. I am off to Dallas, TX to the Environmental Health Center. Will meet with Dr. William Rea on Monday and begin a chemical detoxification strategy. Details on this strategy can be found at http://www.ehcd.com
I sure hope it works as I am not real excited about the possibility of a BMT and I am running out of options!
August 21, 2001 – Environmental Health Center Dallas – A last ditch effort to corral this awful thing.
Well, we’re here and checked into a “clean room” environment. We are staying in specially retrofitted old condominiums with not carpet, no padded furniture and beds that are less than comfortable (hence writing this at 2:24 AM when I should be sleeping.
Dr. William Rea is somewhat impressive but the rest of the outfit leaves a lot to be desired. They seem to be just going through the motions except when it comes to collecting money -they have that down to a science! They have already collected about $5000 and I don’t know whether I am being hustled or being set up for assistance. They have conducted numerous tests so far including a myriad of blood tests for which I don’t yet have results and don’t know what they are. I had a “thermography” which is yet to be read, an ECG Heart Rate Variability Analysis which yielded “abnormal results”.
According to Dr. Rea, I may have constricted blood vessels which may just be related to my AA but he wants to wait for other results before prescribing a course of treatment. I am also now fully immersed into the world of Chemical Sensitivities and growing more skeptical by the day. If it were not for my wife’s unflinching belief in the process, I would be on a plane for Syracuse. If this stuff actually works, Dr. Rea needs to get his staff to clean up their collective act.
He seems genuinely interested in helping me (except for remarks about it already being too late) he is either good at what he does or a good con man. I am certainly hoping for the former as I don’t have a lot of options left. The chemical sensitivity testing requires that they inject a small portion of potentially reactive chemicals into my arm and then watch to see if I react. So far, it has been a waste (10 minutes for each one and loads to go at $20/each) but I’m willing to give it a few more days.
According to Sue it is indeed monotonous and time consuming but worth it in the end. I am placing my life in her hands and trust her implicitly but am still very skeptical about all this hocus pocus stuff. On the other hand, all the conventional docs could do was make me sicker than I was before. It is a very frustrating feeling to watch all this going on and not see a demonstrable progress. We are also now switched from the macrobiotic (greens, grains and beans) diet to a specially designed rotational diet to determine whether or not I have food allergies.
Not sure what the point is to all of this, but I am willing to play along for a while. This “alternative MCS approach” has until the end of October at the latest to prove some results or I’m outta here and on my way to a transplant. More to come…………….
August 24, 2001
Had a terrible reaction to platelet transfusion today. They were single donor, irradiated, Leukopore, and CMV negative. I had my normal pre-meds (Tylenol, hydrocortisone and Benadryl) followed by a second dose and still got slammed! I had a burning and itching rash from the bottom of my feet to the top of my head. Worst case yet and they finally gave me an Attarax that after about an hour knocked me out.
August 25, 2001
I am a bit more optimistic today than earlier. I am actually feeling quite a bit better today and am hopeful that the change in environment and diet is part of it. I have a LONG ways to go, but at least for the first time since this all started feel like I am in charge and am taking action to do something about this dreaded disease. I have started a new page for alternative healing and will continue to expand it as I learn more about this strategy.
August 26, 2001 – The Divine Transfusion
Sunday found us in Atoka, Oklahoma with one of my oldest and best friends from high school and his wife. We had lost touch with Rich (who was in our wedding) and Sally for almost 5 years. Sue and Michelle found them and we made contact about a month ago. And then, as though by divine intervention, we show up in Dallas which is only about 4 hours from they and we met for dinner yesterday. We also went to a church in Atoka at their invitation and received a divine transfusion. I experienced a “laying of the hands” for the first time and also a special infusion from Rich and Sally.
August 27, 2001 – EMF testing Ok
Sue was of the opinion that one of my problems was related to overexposure to the EMF rays from computers. Testing today proved negative so I can use computers without concern! Dinner today is almost like real people – Hamburger, potatoes and peas! And – I had popcorn last night. WOW! Although I like Dr. Rea he is still reluctant to say that he can help. I started sauna treatment today and had a massage. Felt good but not sure what this is all going to accomplish.
September 2, 2001 – Eight Months since Diagnosis
It has now been nearly eight months since my diagnosis and I am probably more hopeful than I have been in six months. It is way too early to declare even a small victory but judging strictly on how I feel, I think this natural healing and detoxification approach has a chance. I reached a pinnacle today in that I was sweating massively which I have never done before and the veteran patients here say that is a big step towards ridding your body of harmful chemicals and toxins that have been building up in your digestive system and immune system for many years. I have also been testing for chemicals, molds, foods and minerals and learning what compounds with which I may be having problems. Once they establish what the testers call “end points” they will develop antigens to those substances which I will inject on a regular basis to help my system deal with them. In the beginning this whole approach seemed a bit far-fetched, but at least for now, it is making some sense and I am hopeful. I have been repeatedly cautioned that there are no “silver bullets” and this is potentially a long arduous process but I have now met some people (granted not AA types) who are finding success in dealing with diseases that other MD’s have given up on. Stay tuned! Received 3 units of blood today and some Desferol. Am hoping that this Texas blood will be my last transfusion. Next testing will probably be 9/14/01. Praying, crossing my fingers and even “imaging” my immune system to do the right thing.
September 8, 2001 – Natural Healing Setback
Well, the platelet counts only held for two weeks but considering my previous record was 10 days, I am still somewhat hopeful. Also got another infection in my site and had a negative reaction to Desferol. Was awake most of last Friday night with fever and chills. Oh what I would give to be “normal” again. Spending almost full time in testing, sauna, exercising and talking with Doctors, Nurses and other patients. Platelet counts were 14,000 on Friday so my Saturday afternoon was spent getting a platelet transfusion (approaching 100 transplants now). Had attempted to work my upper body last week to regain some strength and then contracted the infection so am backing off a bit – Will hit it again next week. I remain cautiously optimistic but it is a lot of work to stay with this program Oh well – Nothing ventured, nothing gained.
September 15, 2001 – Melissa & Mike Get Married
I was scheduled to fly home for the wedding on Thursday. On Tuesday, 9/11/2001 the WTC and Pentagon were attacked so all flights were cancelled. I left Dallas at 8:30 Wednesday morning; met Melanie and Fred in Tri Cities, TN at 10:30 PM, dropped off rental car and then completed trip to Syracuse. We arrived on Thursday evening and thanks to unbelievable work by Sue, Melissa, Kathy and others the wedding went off beautifully. It was a proud day for Mom and Dad to have everyone together and to witness the love shared by Mike and Melissa. Their honeymoon had to be postponed because of the terrorist attack but they spent a couple of days in the Poconos.
September 25, 2001 – Cautious Optimism – Positive Attitude and Financial Woes
I had a CBC before leaving from Texas to Syracuse, one while I was there and one upon my return. I feel better than I have in 6 months and my time between transfusions is increasing. I am now exercising 20-30 minutes each day, my brain is clearing (can walk the straight line) and with the exception of a severe pain in my shoulder, am able to almost function normally. I still sleep more than I used to but the time between transfusions (24+ das for blood and 13 das for platelets has me thinking positively about Dr. Rea and EHCD. Time will tell. I feel really good!
Testing continues – Had a very severe reaction to grass – no more mowing lawns for a living! Actually getting used to the rotation diet and it doesn’t seem as bad anymore. Daily exercise, sauna and massage are working – I sweat more than I have in my entire life and am supposedly ridding my body of harmful toxins (you can tell by the SMELL!).
Settled into my one bedroom apartment without Sue and I miss her terribly. We talked last night but got into financial issues – VERY TROUBLING – will insurance pay for any of this? It is costing $70 per day to stay here plus Dr. visits, vitamins, special diet, testing and now they want me to buy a sauna ($5000) and redo the new house we just moved into (or move). No carpets where I will be spending most of my time (house is wall to wall) and he wants the furnace outside of the house because of my sensitivity to natural gas. Who is going to pay for all this? The money we raised in the golf tournament is long gone and we are now eating away at our retirement (which was already way down due to lousy investments). Sue to contact patient advocate organization. Now that I am finally making some progress health wise, the financial issues are overwhelming!
The Waiting Game
An observation on waiting. Since being diagnosed with AA, I have spent more time waiting than ever before in my life.
1. It started with going to Dr. Kirshner office and waiting to be called for my blood draw, then waiting for results and to see Doctor or Kathy. Then waiting to get set up for transfusion. Then waiting in the admitting room to be checked in. Then waiting for whomever is to give me transfusion, then waiting for paperwork, then waiting for meds, then waiting for platelets or blood to show up, then watching the drip drip of the IV.
2. More waiting at BMT unit and hospital. Waiting to see docs, waiting for meds, being awakened at all hours for blood checks, waiting to go home.
3. Go to EHCD and watch the clock while I exercise and sauna. Go for testing and wait minutes between tests (“Needles” sticks me about 15-20 times a day and I sit and wait in between sticks with no diversions – no TV, radio, books, computers, etc. and the conversation gets old – BORING!)
4. Wait for food to cook – Everything has to be cooked from scratch.
I have always been task oriented so this waiting has been a major adjustment but I am surprisingly getting used to it. Not sure how will I adjust back to a more normal life style but would sure like to get the chance!
September 30, 2001 – There is definite hope!
After a bit of a tough day yesterday ( felt pretty drained all day but still managed to cook, do laundry and did my full set of PT in the AM), I am feeling great again today. Friday and today I feel almost like my old self. Have a decent amount of energy, my mind is clearer than it has been in a long time and I am hopeful!
Heard very good report on another fund raising event (Poker Run at the riding stables) where we raised a down payment for my sauna (will need to continue this treatment when I go home).
Sue is going to try to sell the house as it would cost too much to retrofit carpeting and it is too much for her to keep up if I am unable to mow lawn (grass reaction) and maintain the pool (loads of harsh chemicals). Very disappointing to think of selling after only living there one summer but what will be, will be.
I have been doing lots of research the last couple of days and my head is clearer than it has been in a long time. Now have gone a full month without needing a blood transfusion. I will have a CBC on Monday with results on Tuesday. Read as part of my research that high altitudes can cause high hematocrits – since mine are low and that is what zaps my energy, should I move to a higher altitude?
Speaking of moving, I am giving serious consideration to relocating to an apartment in a warmer climate. I am very concerned about going back to cold country with all the illnesses that float around in the winter time in CNY. Maybe we’ll have to maintain two smaller homesteads if we can sell the place on Lawsher Drive (we hardly knew ye). The research page and the forum contain all my latest speculation and research.
Lunch today is lettuce and artichoke hearts.
October 3, 2001
Felt pretty weak and tired today – Napped most of the afternoon but beginning to feel a bit stronger again. Now over 30 days since blood but did get platelets on Tuesday (counts were P=10, Hemo=8.3, Hematocrits=24, WBC=2.4, RBC=2.4). Have been doing lots of research and discovered a similar disease (actually a Dr. Rea patient has it) called ITP. Have also been dissecting Dr. Young article and discovered in both places the mention of bacteria and viruses as potential causes of AA. I had shingles and have been testing positive to bacteria. Will talk to Dr. Rea about it. Other patients are going through ALF and IV therapy which I also need to ask about it. Settling into a routine of grocery shopping at the organic food store (I do drop by Tom Thumb occasionally for a trip down memory lane), preparing food from scratch and doing dishes like in the old days. I try to catch the 5:30 news but am having a hard time adjusting to that part of the time change.
October 7, 2001 – Checkpoint with Dr. Rea (It’s been 7 weeks)
See update of October 8 in Alternative Healing Section
I feel better than I have in a year
It’s been over a month since my last blood transfusion
I can breathe, smell and exercise 30 minutes per day
I am ridding my body of chemical toxins
I am no longer taking all the toxic meds
I still need platelets every 7-10 days
I can’t make it up a 6 step flight of stairs -Lack of Energy
Still no clear link from immune system to cell growth (CD34 Glycoprotein)
My immune system is still destroying my blood cells
I am taking more vitamins and supplements than I was meds
October 8, 2001 Update
The session with Dr. Rea and Trep went very well. They answered all my questions (see above link) and I may be able to go home if my environment there is safe. (We’re working on it) They agree with my statement below and were positively encouraged by my research and approach. For what it’s worth, if anyone ever gets to the point of going to the EHCD you really do have to take charge of your own situation. If you are lucky, you get 15 minutes of Dr. Rea once or twice a week and the more research you do on your own (including really reading the reports they give you copies), the better off you will be. He looks at your chart for about 5 minutes a week and it is really up to you to do your homework. I devoured my chart, my independent research and prepared the document mentioned above. I think everyone is very different and therefore must do the same. Sometimes it is hard to concentrate, but you have to take advantage of the times that you can think and document everything you are trying to do – as Dr. Rea says “it’s your life – make the time and do the work – what could be more important?” If you are willing to put in the effort, he will help. Otherwise you may as well save your money and stay home. There is “coddling” at the EHCD.
Pretty sure that I am onto something – CD34 presence is significantly reduced in patients with AA. CD34 is somehow linked to threonine, Cystine and some other amino acid (I’m too tired to look it up). I am low in all of the aforementioned amino acids so will take supplements. Let’s see what happens. There is a part of me that believes it couldn’t be that simple or one of the brilliant researchers at NIH would have tried it— but what the heck – I have nothing to lose. My alternative is to continue to get transplants or do a BMT. I am definitely going to exhaust every environmental/natural approach I can find.
OCTOBER 11, 2001 – MAJOR SET BACK
Just when I thought I was making some progress the roof fell in again. I was all psyched up thinking the environment clinical depuration therapy stuff was working and then my counts went LOWER THAN THEY HAVE EVERY BEEN BEFORE! Crits dropped to 16 and Hemoglobin to 6.7. That is lower than when I had my original episode and even after 4 units of packed red blood cells they just barely crept into the safe range again. Very disappointing. Will continue with the EHCD regimen but this was a blow to my confidence. Have been in the hospital for the past two days getting blood, platelets and Desferol with a roommate that had the TV on all day with visitors talking over the top of the TV -What a joy! I was so weak when I checked in I could hardly walk and now I know why – had temp of 102 the night before and cold sweats/chills all night. Up and down we go, round and round we go. Going on 10 months of this fun.
October 11, 2001 – Feeling Really Good Again
In this never ending up and down battle I felt really good and energized today. Like I should feel after getting 4 units of blood and 1 unit of platelets but the counts not responding very well definitely has me puzzled. I took two doses of Calmax from James today, did 30 minutes solid on the treadmill, 30 minutes of sauna and had IV therapy of all essential vitamins, minerals and amino acids plus extra on Vitamin C and a few others. Was unable to buy threonine locally so ordered it online for delivery to Syracuse (hope I’m back there soon). Will buy Cystine and arginine tomorrow. My appointment with Dr. Rea originally scheduled for Wednesday is now tomorrow at 9:45 and we decide if I should go home or not considering the crash episode of Tuesday/Wednesday. I’m not sure what to do – Sick of being here but if another few days would help I will likely stick it out. Need to try to meet with Dr. Griffis (Immunologist/Microbologist) to discuss my CD34 Threonine theory.
October 18 Update – “The Truth – Always the Truth”
I just spent another night in the hospital – My best guess is that I have spent well over two months now in a hospital bed and another two months in a crummy cotton covered piece of plywood all in hopes of finding some way of beating Aplastic Anemia. Today, I would have to say that AA is winning. My counts are actually worse than they were when I started and that is after SIX units of blood and FOUR units of platelets. This is not progress!!
After a little over a week since getting both blood and platelets by platelets were at 5000 (the lowest they have ever been!) and a week ago, my other counts were at their lowest ever. I am angry, discouraged, disappointed but still determined to beat this damn thing. What I am realizing more than ever is that nobody is going to do it for me. My only hope rests in working with my wife on trying to make something in the whole world of natural healing work while continuing to research and try to find my own cure.
(Copied from Alternative Treatment Page)
In summary, I am pretty disappointed at the moment. I have spent nearly $20,000 and my counts are no better than when the day I arrived at the Environmental Health Center of Dallas. I may be impatient, but it would seem to me that after over two months of eating a restrictive diet, getting poked in the arm an average of 15-20 times a day, “depurating” (exercise, sauna,massage), taking God knows how many tests, IV Therapy, Oxygen Therapy and virtually everything they offered, my counts would have improved. THEY DID NOT!
Now, if my objective had been to detoxify and “balance my immune system”, then I would have to say that it probably worked and may even recommend the place to others, but at least for now, I would have a very hard time recommending it to anyone who has a serious disease like AA. Most of the people here have allergies or have somehow been exposed to toxins and or chemicals,and more than a few are just whacko. I needed to get out of here before I became one of them!
So – on to the next attempt. I will meet with folks in Rochester in the next few weeks and seriously evaluate the cytoxan treatment again. It still scares me but this alternative healing strategy is not getting me anywhere. What it did accomplish was to rid my body of cyclosporine and all the other crap that conventional treatments were loading it with. Even my counts are in the tank, I am stronger and can think more clearly than at any time since contracting the illness. By default, the natural approach still probably has a few weeks to go and I may even give it to the end of the year. “Immunosuppresant Theary” (ATG/Cylco, etc) got six months so we’ll give “Immune Balancing” six months and then it’s on to “Kill the Marrow and see if my body will Replace It” (Cyclophosphamide). Great options from a country than can go to the moon but not cure the common cold! I must say that I am less and less impressed with “modern medicine”! I already know more about Aplastic Anemia specifically and Autoimmune Diseases in general than every Doctor I have met and I have only been studying it for a few months – and I’m not getting paid over $500/hour to convince people to try the latest treatments that don’t even work- Must be I’m in any anger phase!!!
November 1, 2001 – Disappointment, Despair and Determination
I am discouraged, disappointed and down in the dumps! It seems like everywhere I turn is bad news. We are having to sell our house, customers are beginning to bail out and we are spending what is left of our savings on treatments that do not work. I really don’t know where to turn and for the very first time in my life, I feel helpless. Just when I can garner enough energy to try and right the ship, I spend two or three days in the hospital or with doctors just keeping myself alive. Nothing appears to be working relative to a lasting cure or treatment. I am simply borrowing other people’s blood cells until they die off and I go back for more. My body is losing in the battle to create its own cells. Oh, woe is me!
Now….I am still determined to beat this damn thing and I will not give up. I am going back on a strict rotational diet, taking all the vitamins prescribed by Dr. Rea and will do exercise and sauna as long as my body holds up. I will continue with this protocol while further investigating Cytoxin and/or BMT. Dr. Lancet is opposed to Cytoxin but promised to talk with Dr. Brodsky or another member of the team who did the Cytoxin study. I have an appointment in November to discuss his findings, plan for a BMT or Cytoxin after the holidays and have another Bone Barrow Biopsy. That is all the news from Lake Woebegone where all the women are strong, the men are handsome, and all the children are above average.
November 10, 2001 – More Days Forever Lost to Doctor’s and Hospital Visit – And a Close Call
A chronicle of the last several days since returning to Syracuse on October 20th:
Friday, Oct 26 – Kirshner appointment – Platelet Transfusion 23 Hour Admit – There til late in the evening
Monday, Oct 29 – Kirshner Blood Check – OK wait til Rochester on Thursday
Wednesday, Oct 31 – Sorry Charlie, you need blood NOW (Crits 23.8) Halloween in 23 hr admit
Thursday, Nov 1st – Day trip to Rochester for mtg with Dr. Lancet and Sharon – Cytoxin not a good idea for me.
Friday, Nov 2nd – Prearranged from Rochester with Kathy K. for early AM platelet infusion – Home Tonight
Saturday, Nov 3rd – An actual day of freedom – cleaned up some junk around the house and out to dinner
Sunday, Nov 4th – Back on the merry go round with a new spin – Got up early, showered and got ready for church then suddenly got severe chills followed by fever up to 103 and spent nearly the whole day fighting it. Sue wanted me to go to ER, I refused and spent the day alternately freezing and roasting in bed.
Monday, Nov 5th – Felt better, showered etc and went to scheduled visit with Dr. K. – WHAM, 8:30 AM Shaking chills so bad could not hold the phone to call Sue. Transferred via ambulance to CGH. Spent several hours on the 3rd floor (only room available on short notice) getting stable (on oxygen, IV, tylenol and antibiotics) and then transferred to 469. Rest of the day getting meds and had another episode that night I think – Had about 5-6 but then kind of ran together after awhile. This one scared the heck out of me. I could not control the shakes and almost went into convulsions at least 3 times where I was about to bite my tongue etc. – Lovely experience! Dr. K says some kind of bacteria (not that big a deal for a normal person, but life threatening for me). Took cultures from line and arm. Also a CBC to check blood levels. Another good shaking session for Sue later in the day. She spends the night with me.
Tuesday, Nov 6th – Early AM severe shaking session. OK lets get to work on this one – Two units of blood, 5 pack of platelets, Vankomyacine, Cephapime and Saline all day and night. A slave to the IV pole again. Preliminary results confirm a bacteria but don’t know what yet for sure. Check back tomorrow. Kathy spends the day. A late afternoon shaking performance for Kathy and Pastor Derrin. Kathy looks worried so that gets me even more concerned cause she sees this stuff all the time. Melissa spends the night.
Wednesday, Nov 7th – Of course an early morning shake session. Dr. Brody (Infection control changes the antibiotic mix a bit – off the vankomyacine and add something I don’t remember) Sharp pain at catheter site – change dressing and do a culture. Melanie and Fred arrive early Thursday AM after driving all night. Oh, oh this is getting serious. I put on a special matinee performance for them about 2:00 PM.
Kirshner takes one look about 4:30 and says “This is what we call in medicine, a no brainer – it has to go.” Schedules immediate surgery – Dr. Congelli arrives at about 8:00 PM, a little morphine and lydocaine, and by 8:30 PM, my old friend Bernie Hickman is history. Bernie saved me from approximately 500 needle sticks so he was a good friend – So long Bernie. Back to getting needle sticks from butchers. One of them bruised my arm reminiscent of the first Rochester experience. I have a black bruise about 2″ by 4″ under my left arm from an IV poke!
Thursday, Nov 8th – Dr K. 10:00 AM “You have septosemia, negative gram rod very serious blood infection that needs to be addressed right away.” Stat back on the vanko – Carol actually steals someone else’s dose and it is going in to me about 15 minutes after the order is given (normally even a stat takes at least an hour). Dr Brody later confirms that I actually have two seperate bacteria infections and will get more vanko and cephapime. Watch for another day or two and then go on an oral and go home. No shakes on Thursday!
Friday, Nov 9th – Released at 10:00 AM with oral SMZ-TMP DS Tabs (Sulfamethoxazole) Known to cause Aplastic Anemia – Now that’s interesting! This one sounds like a real winner, but have to get the bacteria under control or it will kill me. Nice choices I have. Speaking of choices:
I am now very concerned about the short duration between transfusions – blood was less than a week and platelets were only 4 days – and they did not respond well at all. I will likely need either or both again early next week. The bacteria episode also is making me seriously reconsider the decision to wait for a BMT til after the holidays. I may not have that long at this rate. I have witnessed via newsgroups how quickly people can be taken by one of these infections and I don’t want to go that way. So – email off to Luci inquiring as to how quickly they could arrange the BMT if I decide to turn up the time table. Will watch counts this week and probably make an ultimate decision shortly – but to complicate things, We sold our house tonight! Accepted an offer about 7:00 PM on Friday. This will at least stop the financial bleeding. Wish it was easy to stop my bleeding!
November 29, 2001- Cytoxan here I come!
But first, an update on what has been happening since last I updated – We have indeed sold our house and have put in an offer on another smaller house. Will cut our mortgage payment in half and pay off in 15 vs 30 years. Overall savings of $400,000!!! Wow. Still fighting with the insurance company over the bills in Texas and not even sure how much we owe for all the other stuff. Will probably try to get to the bottom of that mess this week-end.
Pretty much normal stuff with Dr. Jeffrey Kirshner and Nurse Klinger. Platelets weekly, blood bi-weekly and now for the good news – Meeting with Dr. Jeffrey Lancent (Jeff Jr. as I like to call him) and he had an email discussion with Dr. Brodsky of Cytoxan fame and after learning that Dr. Brodsky has indeed had success with previous ATG failures has decided that we should give Cytoxan a try. Will also put me on daily iron chelation treatments so I need a Pick Line? installed. Cytoxan will be scheduled for February after the holidays and house selling and moving is out of the way. My job is to stay cool and avoid infections til then. Have been doing a little bit of real work for a customer for a couple of days and it feels good to be “back in the saddle”. So – Cytoxan it is.
Cytoxan is similar to ATG but completely wipes out the immune system and hopes that my body will repair its own bone marrow problem. You can read more about it by searching on cytoxan and/or cytoxin on the search page – I spelled it wrong for awhile. Special thanks to Mindy Pember for encouraging me to check out this protocol. I am hopeful that this will work for me as it has for so many others.
We had a wonderful Thanksgiving dinner at our house and will likely have Christmas in the big house before our downsizing. Sue and family hosted 30+ and we all ate too much but enjoyed the day.
December 1, 2001
Taking on the Insurance Company. I anticipated this was going to happen but did not realize how much effort Sue has already put into the battle. With the combination of my wife’s persistence and my attitude, they are in for a battle. We have already been in contact with The Patient Advocacy Organization and on their advice will be contacting the State Attorney General’s Office. Any further suggestions would be greatly appreciated.
December 9, 2001
We have now assembled about 5 pounds of documentation on the alternative strategy, chemical toxicity, etc. There is a current copy of our letter and the book list lists most of the docs we referenced. We also received a very good letter from Dr. Rea who described how the therapies should work (I will scan it and get it on the site later today hoepfully) – now I just need to stay on the program and hope it works. Sauna is in town and will be picked up on Monday.
I must be getting better ’cause Sue told me (in her own special way) “you can pick up and clean a little while I’m away.” One of my goals for the next week is to assemble all of my materials from multiple places and begin the draft of my book. I have some here, some on various computers, some in journals and lots still in my head.
I am now on a desferol IV program that requires daily 1-2 hour infusions in an effort to bring down my iron levels. I officially have multiple organ dysfunction and from reading about others’ problems, I am sure that the Docs are worried about what comes next (I’m probably too ignorant to realized what is happening and just keep on keepin’ on).
Worked out an arrangement with several of our better customers whereby we will continue to provide service on a different basis given my illness. Melissa is taking the lead and I will support her as I am able. Not sure if I mentioned this earlier or not, but I now am the proud owner of a Handicap sticker. What a joy to park close to entrances but I would gladly give it up to return to my old self – well, maybe not! I also got a speeding ticket the other day when distracted about having to sell our house. The daily battle continues….. Friday was an all day hospital visit again where I had a nice conversation with John (non Hodgkins Lymphoma) re chemical toxicities and how many people in the baby boomer generation are being impacted by these auto-immune diseases.
Also learned that another CGH patient is now 100 days post BMT and doing well. Way to go Paul! I now include Ed, John, and Paul as members of my local informal research panel. They all reside in Syracuse and I pick their brains whenever we meet. CGH is adding a new, more private, infusion area so I may not be able to bug people as often. But on the positive side, I won’t have to put up with others wanting to watch the meaningless drivel on the black box.
When you first discover petechiai, you will probably panic and think there is something seriously wrong with you. Well, you are right! Call your doctor and/or get yourself to the emergency room ASAP! You are bleeding internally and need medical attention NOW! My first trip to the ER, my platelet count was 3,000 vs. a normal 100,000 – 300,000.
Some interesting news from Nurse Klinger, my “Advocate General” – The longer, your body compensates for the lack of oxygen and low counts, the larger your heart muscle gets. So now I have one more thing to worry about – not that I worry much anyway – and it just means my heart can be bigger for those around me!
By the way, I got the cleaning done, so now I can play around with the cool new animated gifs sent to me by Vivianne – Thanks Vivianne.
Sauna arrived, is uncrated and 3/4 assembled as I write this. Had to take a break to let the power screwdriver recharge! I wish these darn tools could keep up with me. After my two hour drill with the desferol IV I went to work and assembled the sauna. It’s a big sucker. Takes up a good portion of the basement and I wonder how it will fit in the new place – yes, in about 1-2 months I will be disassembling, moving and reassembling – now what sense does that make? None, but I just might get lucky and get detoxified in time to avoid the chemo, so it is definitely worth a try.
Sue fixed a great pot roast with all the trimmings on Sunday and we hosted Jack, Liz, Ted & Addie. A very nice time. I treasure the time with my friends and family and look forward to each day I am here. I am very upbeat these days, feel good and hope it lasts. The insurance company meets today to decide on our case – A positive outcome could really lift our spirits as we are downsizing and selling off assets just to stay afloat. I wonder how others who are less fortunate than we are cope with these issues. Thankfully Sue can work, Melissa is holding AEBIZ together, I have SS disability and the insurance company has paid for a tremendous amount of the treatments. I never had any appreciation for these issues until now – hopefully I will be more understanding of others’ plights as a result.
It has been very interesting to pass through the various stages of coping with these beast. Even within a given day, I will go from feeling very upbeat, to being in the dumps, to being angry, to having hope and back to feeling good. Right now, it feels good to be somewhat normal except for the transfusions and desferol infusions. I can think, work a little, enjoy the sunshine (it’s been incredibly warm in UPSNY this year – as I write this, it is close to 50 degrees and supposed to hang on for awhile yet) and pretty much lead a normal life.
December 22, 2001 – So this is normal?
My daily routine is now the following:
Awake at 6:00 AM, plug IV in for daily dose of desferol to chelate the blood out of my system (Docs are concerned that my feratin level is too high and will cause organ damage)- Takes about 1.5 hours. Exercise from 8:00 – 8:30, take my daily dose of abut 15 vitamins, sauna for an hour, wrap my arm so it does not get wet and take a shower and get dressed. It is now about 10:30 or 11:00 and I can start my day. Near the end of transfusion cycle, I can’t do the exercise and sauna due to lack of strength and energy. On the good days, I can function normally after 11:00. On the doctoring days, I go in for blood count checks and/or transfusions.
For example on Friday I got up at 6:30, cleaned up and was at CGH Home Tonight at 7:30 getting hooked up for blood. Returned home about 3:30, hooked up for chelation IV and after showering, had my first oppty to be IV free at 5:30 PM. And my wife asks “Why are you so cranky?” I reply, “Because dear, I have been hooked to an IV all *7&654%&^*^(&**(*)* day.” So I ask myself “This is normal?” An here I am at 6:30 on a Saturday morning with my IV safely plugged in getting chelated.
Alas, Dr. Abud warned me that my life would never be normal again and it has now been almost a year since that prophetic comment. Sue and I celebrated our 32nd wedding anniversary in the first snowstorm of the season reminiscent of our wedding day. We went to Inn of the Seasons and had a somewhat disappointing meal but at least we were able to celebrate. Dr K and Nurse K expressed mild amazement that I was as healthy as I am during last visit. Last year at this time I was among the walking wounded barely able to get around.
We went to a customer/company xmas party last night and Mike asked me if I could go on receiving transfusions like this forever. I guess I could but must be careful about infections, worry about organ damage and face the fact that at the bottom of the cycle I will be pretty useless. I read about others who have been doing it for many years so I guess if none of the remission/cure strategies work, I will just keep on keepin on and make the best of my new normal status.
If anyone is interested, I have my draft notes for a book now posted here at http://aplasticcentral.com/book.htm. It’s in very rough condition but I am attempting to consolidate all my notes from various sources. Hopefully over the next several weeks it will begin to take shape.
I caught the last bit of a news report last night about new stem cell transplant protocol at Hutch not requiring full HLA matching so am off to surf. Good morning to anyone who reads this.
January 18, 2002
I’m not sure if I have much of anything new to report, but have not updated my journal since before the holidays so will at least capture some of my feelings at the moment. The holidays were very nice. The whole family was together for several days and it was wonderful to be alive. At this time last year I was not sure if I would see another Christmas. My original prognosis was 6 months and here I am 12 months later and beginning to think I may have a shot at beating this thing.
I feel stronger than I have in a long time and am it has been 10 days since my last platelet transfusion. That’s nothing to write home about, but I do feel a bit stronger than usual and have been exercising, taking a sauna and working almost every day. I have managed to put in 2-3 full work days a week for the last 2-3 weeks and have not hit the exhaustion wall in quite awhile. I’m even daring to think a little longer range than next month again. Need to get the house move and the cytoxan thing behind me and then can hopefully thing about being normal again. I am certainly concerned about the effects of the chemo as I know it will knock me for a loop (hair loss, vomiting, weakness, etc. etc.) but others have faced it and I can too. I am probably in better physical shape than I have been in the last two years so that should definitely improve my odds.
Sue, family and friends continue to be patient and supportive with all my mood swings and days of exhaustion. The exhaustion usually comes about 12-14 days after blood transfusion but I am learning to really take it easy on myself when that time approaches. Immediately after the transfusions I am strong and full of energy.
I am really gratified by the number of people who have written saying how much they are getting from the web site. I receive at least 1-2 notes every week and the traffic is now at about 300 visits per day. I have worked hard to re-organize all the stuff and will likely go into research mode again soon. I want to find out more specifics about stem cell research and therapeutic cloning as I think they both can potentially have a major impact on our disease. The obvious question becomes can they do anything in time to help those of us who are transfusion dependent?
Bye for now – It’s 1:00 in the morning and I just won $40 playing poker.
February 11, 2002 – Another Line Bites the Dust
Yes, now my PICC Line has become dysfunctional. It essentially pulled out and needs to be removed. I will be getting a new Hohn Catheter on Monday. That is what they were planning for my Cytoxan so it’s no big deal.
Beyond that, we have successfully moved into a new smaller house thanks to the extraordinary effort of family and friends. We are about 75% settled and to our surprise everything from the old bigger place fits in the new place.
Counts and transfusions are pretty much the same as always. I guess I am learning how to pace myself around the transfusion times as I seem to have good energy for about 12 days until I start to crash. Beyond the inconvenience of 3 hours of desferol and 1 hour of exercise/sauna every day, I have become accustomed to my new lifestyle. Certainly am no longer an “A” type. Probably about a C- but it beats the alternative.
– More on the Hohn and other catheter experiences
I have now been the proud recipient of three types of cathethers so I can speak from practical experience and hopefully warn some of you about pluses/minuses and dos and don’ts –
So here is my monologue on the insertion, care of and dangers associated with IV chatheters. Start by reading the link below:
My first experience was with the Hickman Long Term Triple Lumen Tunneled Catheter – Hickman was the guy’s name who invented this little gem and triple lumen refers to the number of tubes ultimately available for plugging in to. A lot like plumbing – Hot, Cold and Warm with seperate “faucets” for each.
This was installed via a surgical procedure in February of 2001 and lasted for about 8 months before becoming infected. This is by far the most painful and invasive but it did last me a long time and helped avoid numerous butchered IV insertions. (My arms had become black and blue from all the needle pokes.)
They begin by providing local anesthetic (lydocaine) and then make two relatively small cuts (one in your neck just above the collar bone and the other in your chest. They then “fish” a wire down through your vein and directly into the left atrium of your heart.
This is not as scary as it sounds, but I would have appreciated knowing what to expect before the procedure. They then follow the wire with the plastic tubing which becomes the permanent IV tube. Finally they “tunnel” down from the insertion point in your neck to a permanent mounting place on your chest, attach the claves (little blue connectors which provide a heparin lock to prevent leakage and little plastic clamps which are a further safeguard.)
The whole procedure took about an hour from start to finish and if I were to have this done again, I would opt for “real” anesthesia rather than the local. It was not a pleasant experience. I had some rather annoying pain for a couple of days afterwards and then it became like an old friend.
I “flushed the ports” on a daily basis with the 10 cc’s of saline. This procedure keeps the lines “patent” or able to draw back and forth. I also had to change the tagaderm (clear vinyl patch) dressing on a regular basis. After several months, the stitching used to secure the catheter to my chest became very irritable and ultimately became so infected that I landed in the hospital with a sepsis (blood) infection that caused rigors (shaking), severe chills and a fever of over 105 degrees.
This was definitely no fun and landed me in the hospital for about a week. As a result, my Hickmans was removed (had to also be done by a surgeon but was less painful then the insertion and was done in my room rather than in a surgical area.)
I then had a Peripherally Inserted Central Catheter (PICC) installed in the fleshy part of my left arm just below the elbow. This was by far the least painful but also the most useless device. If they suggest a PICC, run the other direction. Mine only lasted about two months, was constantly in the way and ultimately pulled completely out.
In fairness to the PICC, my “statlock” got wet shortly after the insertion and none of the people who looked at the line knew enough to replace the statlock (a very sticky butterfly type bandage that locks the line in place on your arm) I subsequently learned (while having my Hohn installed) that immediate replacement of the statlock may have prevented the line from pulling out.
My latest experience is with a “semi-permanent” device called a Hohn Catheter (again name dfor the inventor). Hohn gets a B+ so far. The procedure was performed by a radiologist and was similar to the Hickman experience but less painful. It only requires the top insertion point near the collar bone and does not normally require suturing. (The doctor made the decision at the end depending on how well the insertion went). In may case, they decided the statlock would suffice.
I have virtually no experience with this device yet, and except for the fact that it is more exposed than the other two (looks like a Frankenstein insertion device hanging out of my neck) I think I will probably like this one the best.
Closing comments – be very careful in the first few days to not get the “site” (insertion point) wet and then try to keep it covered with saran wrap or a “baggie” when you shower. Moisture under the bandage is bad news! If it gets wet, change it immediately. I’m pretty sure that I contributed to my sepsis experience by letting mine get wet (got careless after awhile). Also be sure that you or anyone who changes the dressing thoroughly (20-30 second scrub) washes their hands and wears gloves. My wife (RN) tells me that the gunk under your finger nails is the number one cause of sepsis infections.
Here ends the monologue – be sure to check out the link above and feel free to email me with questions. I am now a self appointed expert on IV catheters! Also check my website at http://aplasticcentral for research information, stories of other patients and even some good music.
February 22, 2002 – Boredom Sets In?
OK – I’ve had my little sabbatical and it was nice for awhile, but I am feeling more and more useless. I’m certainly grateful to even be here but I need to start contributing again. Look out world – I’m gonna be back!
SAA 1/9/01 2X ATG no success, Cytoxan scheduled for April 2002
IT IS NOW OFFICIALLY THE FIRST OF MARCH AND IT HAS THE MAKINGS OF A GREAT DAY!
It is now 29 days since my last blood transfusion so I have reason for cautious optimism. Last trip to the docs yielded a 27.1 “crits” count and I have an appointment tomorrow so am anxious to hear my counts. I feel much better than I usually do and am hopeful that something good is happening.
I am tentatively attributing the moderate success to the “ALF” (Autogenous Lymphocytic Factor) cooked up in Texas by Dr. Re Re, the diligent use of the Sauna, daily injections of antigens, an air cleaner in our bedroom, moving to a cleaner house and daily vitamins and supplements. If this stuff actually works I will be happy to provide details – Still a bit early to declare success. I remember all too well the false progress in Texas.
My ability to focus seems to come and go a bit, but for the most part I am able to think pretty clearly. I am actually contributing a bit with the computer business and am even thinking a little bit further out than next week. I am still tentatively scheduled for cytoxan in April but am thinking maybe – just maybe I won’t need it?
Some other great news to report:
Michelle (our oldest) was named Teacher of the Year at her school in Florida – Congratulations to Michelle!
Melanie (middle) is expecting our first grand child in May
Melissa is essentially running AEBIZ these days and it is paying for itself
Sue is making enough money to support us (with my SS) and is my constant source of strength and encouragement.
SO, I HAVE MUCH TO BE THANKFUL FOR AND TO LIVE FOR.
I will keep fighting the good fight and will report my counts tomorrow.
Reprinted from the catheters page
Hohn catheters SUCK (imho)
My Hohn catheter lasted about a week and when it came out we discovered that it had barely enough tubing to make it from the insertion point to my heart. I’m not sure if it was a botched installation or the device itself but I would certainly question anyone who wanted to stick one of those puppies in again.
I am back to a “new type” of PICC line according to the nurse practicioner who put it in. She had a great time poking around trying to get it inserted. My arm looks like a punching bag. I feel like a much abused guinea pig. This is now my fourth catheter in a little over a year.
March 1, 2002 – Oh Well
Counts today – Crits 25.x Platelets 8 – No real progress made. Oh Well
March 9, 2002 – Cramps back
I thought that I had put the severe leg cramping behind me but they are back with a vengeance. Platelet counts were 19 and crits 29.9 on thursday so no transfusion this week. Had Nurse Klinger fax my other blood work – Feratin is still off the charts 1900 vs normal high of 400. Also something whacko with something called ALT (AGPT) that appears to have something to do with bilibubin
Increase of serum alanine aminotransferase (ALT, formerly called “SGPT”) is seen in any condition involving necrosis of hepatocytes, myocardial cells, erythrocytes, or skeletal muscle cells. [See “Bilirubin, total,” below]
New page http://www.neosoft.com/~uthman/lab_test.html courtesy of Dr Uthman describes it and Sue says “you’re in trouble with your liver!” And here I thought this AA stuff woud be fun.
March 18, 2002 – Mood Swings Defined
I was never much into this kind of stuff before but have really noticed how differently I feel from one day to the next. I guess I always kept myself too busy in the past to pay much attention to how I “felt.” Now that I have so much time on my hands (2 hours of desferol every day, 45 minutes to an hour in the sauna) I have all kinds of time to do nothing more than think. I keep busy with crossword puzzles etc, but even that gets pretty old at times. So…on to the topic.
I experience frustration with not being able to do the things I used to do – It is still a major effort to hold my arms above my head for a long period of time. I get tired very quickly since I have none of my own blood cells and the ones I have are severely reduced. Unless I am working on a computer problem, I have very limited ability to concentrate on anything. But then, most days I just kick myself in the butt, remember how bad it was on all the drugs and in the hospital and just keep on keepin on.
I am really hoping to have enough strength to play some golf this summer but have very little stamina and can’t seem to build it up – whenever I try, my heart starts pounding and my head tells me to cool it. I experience varying degrees of hopelessness, despair, anger, frustration, uselessness and self pity. Luckily these feelings don’t last a long time, but when they hit it is a very new experience for me. I used to be constantly filled with energy, optimism and hope.
More on “feelings” than I would ever care to repeat………..
March 23, 2001 – My Bag of Rocks and a Full Perspective
I feel like I’ve pretty much “said it all” at this point, but will add a full year retrospective…. Someone told me a long time ago, that we each have our own bag of rocks to carry and up until now, I never really felt like I had a very heavy load. Sure, we had issues with our children and the job was stressful but it all seemed manageable and was as much someone else’s personal burden as my own. Now, for the first time, I truly have my own “bag of rocks” and for whatever reason have been very public about sharing it. I know many others who have chosen to carry their bags privately and the world doesn’t even know of their situation.
Since I charted this course a long time ago, I guess I will continue and add the perspective that although the load seems pretty heavy at times, it is far less than others and I have learned to cope with my situation. I have the love and support of a good wife and family.
I have accepted the fact that my physical activity must be monitored. I have accepted the fact that 2-3 hours of my day and 6-8 days per month is involved in medical treatments of one kind or another. I am thankful that my mental capacity still seems pretty good, I am able to function in a manner that allows me to participate in our business.
All in all, things could be a heck of a lot worse and if this is to be my destiny, then I shall carry on. Except for medical reports and updates, I will probably not be giving much in the way of updates because I have settled into a pretty mundane existence.
Thursday, March 28 On Again – Off Again or Biting the Bullet
After many days, weeks and months of consternation, I have finally decided to go for the high dose cytoxan, checking into Rochester Strong Memorial on the 11th or 12th of March for an anticipated stay of 3-4 weeks. I am told I will be vomiting, extremely weak in reverse isolation etc. – probably even worse than the ATG experience so I have been very reluctant to subject my body to this again, but on the other hand, I feel like I am playing Russian Roulette with the continued transfusions and desferol. SO – Off I go for a quick trip to Florida and when I get back – It’s time to bite the bullet.
Tuesday, April 2, 2002 – The Cytoxan journey begins
I am now committed to the cytoxan strategy as I will have my first preliminary testing done today – a Mugga and a Pulmonry Function Test – Guess they want to know if I am strong enough to endure the pending complications. Will provide my usually thorough <grin> explanation of the procedure later today….MUGA stands for Multi Global Acquisition and is a short alternative for a “Ventriculagram?” – They inject a dye and then watch how it flows through your heart with an XRay or some kind of camera. – It must not have been an xray cause I didn’t see shields anywhere and it was on for 10 minutes at a time – may research that later. Pretty much painless and a non-event relative to other things an AA person goes through. Took about an hour altogether. And then the “PFT” Pulmonary Function Test – Even less of an event – breathe into a tube for about 30-45 minutes and go home. Checking to see if I am tough enough to get kicked in the xxxx. That’s it – I’m off to Florida and when I get back I will go to Strong for Cytoxan. Thanks for the many notes of encouragement from many of you who read this on a regular basis. Will have Melissa keep everyone informed as to my progress here. I went back and read about Mindy’s experieince and know that it is going to be a tough road. She lost her hair at day 17 and was in reverse isolation for almost 3 months.
Wednesday, April 10, 2002 – Cytoxan Here I Come
Received a phone call from Strong and will tentatively be admitted sometime tomorrow. Have lots of apprehensions, but for good or bad, have decided this is the right course of action for me. I will try to give updates when I am able. Will be bringing my laptop etc along and may update via the old forum or some other means if I have a slow connection
Friday, April 12 – No Room at the Inn and Preventative Maintenance
So I received a second phone call (this time from “Peggy”) informing me that I would be admitted to “6-3400” at Strong Memorial on Thursday between 3:00 and 4:00 PM Remembering the terrible experience I had with 6-3400 last time, I politely told Peggy that I would rather rot in hell than go back to “6-3400”. I called Sue who supported, nea stiffened my backbone and said “no way”. I then got in touch with Lucy and said I would prefer to wait until I could get on the 8th floor where they know how to take care of patients properly.
So – here I sit waiting for a room to become available so I can go get sick…. Meanwhile, back at the Desferol Treatment Center (My bedroom), I get a call from my friend Krista at CNY Infusion (Home Health Care company who kindly delivers my daily dose of iron fighting ingredients). She tells me my pump is due for “PM”. I have been on desferol so long that my pump needs PM – what a milestone. I am about to endure my own PM soon.
April 15,2002 7:00 AM -On again- Off Again, Now on Hold
Sue and I checked in yesterday about 2:00 and after meeting with the Dr and NP it was determined that we will wait until today to make final go/no go decision. Seems they are quite surprised with my ferritin level at 1300 (they thought it was still higher) and the fact that I have gone six weeks since my last PRBC transfusion. But then when they drew my blood for CBC the HCT was 24 and they will be giving me blood today…so who knows, I may be getting my bald head after all. I’m officially on hospital time. Sleep for 1 hour and somebody comes in to wake you for something. <grin>
April 16, 2002 – No Cycophosphamide for you old man but here, take this Biopsy
While Lucy performed my fifth Bone Marrow Biopsy, Dr. Young Jeff told me they were going to hold off for a while and see if there was a positive trend developing. So, we packed up the 3 weeks worth of clothes, CD’s, computers etc. and headed back to Syracuse where I just completed my desferol treatment. I have been through the whole range of emotions about this one, but have settled in on one thought for now. Maybe, just maybe something is working and I can avoid the 3-6 months of enduring cyclophosphamide side effects and wondering whether or not I will be able to get back to where I am now.
I feel better than I have since this whole thing started, have been able to play golf and the time between RBC transfusions has indeed lengthened, but platelets are still pretty much a weekly to 10 day thing so I am really not sure where this will all end. I am going to really try the Alternative approach with vigor because it has apparently been at least partially responsible for my limited progress to date. It is extremely difficult to stay on this kind of regimen when the world around you is enjoying ice cream and french fries and chicken wings and soda and coffee and turkey and and green eggs and ham. So, I shall suck it up, play as much golf as I can handle and live in a bubble. May just go back to researching what the heck it is that is marking my cells with CD34 and do some molecular/cellular level research.
Counts prior to RBC and platelets today – HCT 23 and Platelets 10.
April 21, 2002 – It’s been a hell of a week in Lake Woebegon – New Record 106.4 Reached
No, that was not the temperature outside Alice, it was temperature inside! Went to Rochester on Monday, April 15th fully expecting to do the cyclophoshpamide thing but Young Dr. Jeff recommended that I hold off a bit longer since my time between transfusions had lengthened a bit, I looked and felt good and there seemed to be a bit of a positive trend developing. Lucy Lucy gave me my 5th biopsy, I received RBC’s and Platelets and went home on Tuesday feeling great. Tuesday a truck parked in my driveway and Wednesday morning it ran me over.
I made it to Nurse Klinger long enough to confirm that temp was 102 and rising. Had to leave her office by wheel chair and arrived at good ol’ CGH at 2:00 Wednesday PM. Took forever to get me checked in (my pal Judy had obviously departed for the day as she usually streamlines the process before I even arrive). Finally made it to a bed about 3:00 only to be greeted by “Ellen” (name not changed to protect her). She was anxious to get out and enjoy a beautiful above average day in Syracuse and failed to accurately chart my temp at 105.
Next nurse (don’t remember her name because by then I was pretty out of it) also futsed around the entire shift and left me with a temp of 106. Finally my hero Kristine arrive, took charge and said “Whoa, we have to get this thing under control. My temp topped out at 106.4 (I believe that to be a new world’s record for old farts who live to tell about it). She got me on a cooling blanket and ice packs, infected line was pulled next day, started vanco and finally began to feel like I might live. I have really had enough of these shake ups! Thank God Sue was by my side and insisted people do their jobs or I probably would have bought the farm, ranch and entire state of Texas.
Long story short, I missed the whole day Thursday and finally today (Saturday) am returning to normal AA status (light headed, lousy counts and great attitude) (yuk!) My PICC line had staph infection and had to be pulled so I will now be going for line number five (I think – I kind of lose track of these things).
I am now really torn about not doing the cytoxan thing, but am going to try to make it through the summer on the Dr. Re Re program. Need to enjoy some time off with my wife and family, see my grandchild and play some golf. AA is just going to have be put on the back burner for awhile!
Good night and god bless from starless (that’s too normal) downtown Syracuse.
April 21 P.S. What was that rumbling sound? An earthquake? Here? This is not California Kelly. Friendly like a newborn puppy (and nurse for today) Kelly says “I’m from California and I didn’t even notice that little twitter. I lived through the real thing on a regular basis.”
ALBANY, N.Y. (April 20) – A moderate earthquake struck the northeastern United States early on Saturday, rattling homes and shaking furniture and nerves from northern New England to Maryland, authorities said.
The United States Geological Survey said the quake struck about 15 miles southwest of Plattsburgh, New York, near the Canadian and Vermont borders at 6:50 a.m. and had a magnitude of 5.1, potentially powerful enough to cause heavy damage in a populated area.
The epicenter, which was at a depth of 3 miles (five km), was felt in New York, Boston and Buffalo, and as far as Baltimore to the south and Ottawa and Toronto to the north.
April 22,2002 – Dateline 4:45 in the AM somewhere over “earthquake Syracuse” – I thought the earth was going to open and swallow me up.
I awoke at 4:30 and jumped out of bed for a journey to the bathroom – what a mistake as you experienced AA’ers well know. I am just now recovering 15 minutes later. My heart started pounding like it was going to jump out of my chest. I guess this is a function of what Nurse Klinger calls “Low Blood Volume and the heart compensates by working harder”. I refer you back to one of my most recent entries on how I will likely eventually die from this bugger. It will either be from an infection such as I just experienced or my heart will give out from working too hard. Both have been quite frightening experiences -I don’t actually fear death for me -I have faced it real time now and understand. I will fight to stay alive with everything I have for my wife, family and friends -I owe them and myself that effort – and I have a new “special someone” (baby torres or “b.t.”) to stay alive for. our kinds grew up not having their grandparents on my side and I sure don’t want that to happen to our grand kids!
So the moral of the story is this: 1. always wear gloves when working around potentially infectious areas and insist that others do. 2. DO NOT JUMP OUT OF BED WITHOUT FIRST SITTING UP AND LETTING YOUR HEAR REALIZE YOU ARE AWAKE – YOU STIFF! (btw, Sue has repeatedly warned me about all of this but in my hard headed manner I have to experience it for myself. Speaking of Sue – Without her love, experience, compassion and dogged persistence I would not be hear to continue this exciting chronicle. She has saved my bacon on countless occasions by getting me to the doctor when I was ignoring obvious issues, pestering nurses into doing their jobs, questioning Doctor’s who didn’t know or care about what they were doing and nurturing me through the hells of this baby.
Also in the spirit of giving credit where it’s due, there are several great doctors and nurses who are also responsible for keeping me around ( there have been some bad ones and to them I say -“Please find another profession where you don’t hold someone’s life in your hands”. To the good ones (and they know who they are cause I tell ’em – Keep it up, continue to fight the fight and as hard as it must be at times, pick up the slack for the laggards. This time in particular, I need to say a public thanks to Kristine who was there at the right time and then to Michael, Laura, Kim and Julie who have been doing a good job of picking up the pieces. I also remember good care from Kelly and a couple of others I didn’t even get names cause I was so out of it – but you again probably know who you are and I appreciate it on behalf of all us poor shmucks who enter the increasingly shaky world of health care. I must again thank my primary team – Nurse Klinger, my main man Dr K. (The first one to save my life) and the whole team at HOACNY – They take their motto seriously and always treat me with unbelievable respect, dignity and kindness. And to the official primary care team at Strong (Lucy Lucy, Young Dr. Jeff, Sharon, Anne, Rose Ann and the entire Nursing Staff – Kudos to you guys – I always feel like I am staying at the penthouse when I come to Rochester!)
And of course my friends in Home Tonight (the whole nursing gang + Judy in admitting who has eliminated the admission hassle and Ann who first did that for me) you alwasy make a visit for a transfusion feel like it is a good time rather than the drudgery it could be. Your constantly positive attitudes and welcoming me back like I was a returning camper always brighten my day. And since I am in the public thanking mode – Thanks especially to my daughters and sons-in-law and closest friends who each contribute in their own special way to help me keep fighting the good fight. Often times it is words of encouragement and other times it is a good healthy kick where it is needed most or a timely “I love you Dad”, a hug or a quick one liner to boost my spirits. So – Thank you all for all your support, caring and encouragement. It means more than you can ever realize.
Now back to the chronicle and btw if you are having a hard time reading this, I will hopefully save it to the normal format shortly so you have normal paragraphs, spacing etc. I just wanted to make it sure it gets captured for posterity <grin>
In the “It bewilders me department – It is now 5:40 in the AM and I hear loudly over the hall speakers “Miss Joanna Duke 5863, Miss Joanna Duke 5863” Don’t these people realize this is a hospital and people need their sleep! For God’s sake this is the era of pagers – If you are so important that you neeeeed to be paged at 5:30 in the morning, wear a goxmj88&& vibrating beeper – and that especially goes for you Dr. Newlander, Dr. Ovid Newlader – or is it CGH that has such an antiquated system that they have to announce every page. My God! It’s worse than living by an Automobile dealership who pages the neighborhood for their sales people “Joe Sales Guy, extension 5583 – Joe Sales Guy extension 5583” can be heard from rooftops blocks away. Whoa, buster – you are in rare form this morning.
So anyway, the reason I started this whole mess was to report on the good and bad of the AA experience and here is the update I started about 15 minutes ago:
For the record, I was on Cephapime and Vankomyacine (both strong antibiotics – been there, done that, have the T shirt and the battle scars to prove it). Once good ol’ Dr. Brody (Infectious Disease Guru hisself) decided what the bugger was for sure, he and Very Kind Dr. Puc dumped the Vanko and I am now on a new one for me called Kefsol – according to Sue and Michael the wonder drug of 20 years ago – still around and providing wide spectrum antibiotic care. -The thing everyone worries about for me is that the more of these antibiotics I have to take the more likely my body will build up antibodies against them and one of these days they will just not work.
Very Kind tells me they actually found a staff germ clinging on to the tip of the PICC line. – I should ask to see it – I have all kinds of weird images of what a staff germ hanging on a PICC line would look like – The best one is of a Jules Verne like creature attaching itself to the stern of the good ship lollypop waiting to attack me if I venture out into the water. And speaking of Very Kind, she was also very good about keeping me up to date (she can pinch hit for Super Doctor K anytime)- popped into advise me that the staph germ was not the worse kind and they were going to immediately switch me off to the lighter antibiotic.
Also in the FTR department, my palms are ashen gray again until I get up and challenge my heart to get down to business. My counts (much less of a kick these days and especially having to use up “washed wanda – she’s kinda weak ya know” to fight the infection:
HCT 28.2, WBC 1.3, HGB 10,RBC 2.7, Platelets 15 Jolly Fun Jolly Roger! So – Hello Sunday Morning – I can hear them starting to line up their tools and ammo for the day – I’m really only visiting you know and do not need another pike in the arm. We interrupt this broadcast for a word from our favorite night nurse and her side kick Kim. Laura always calls me “Honey” and I am sure I am the only one – kind of like the friendly waitress at the Quick Cup Diner who makes everybody feel like they are the only ones in the joint. Favorite Night Nurse Laua and her Faithful Side Kick Kim (She of Marcellus High School basketball fame) just stopped in to report temp of 99.2 and BP of 119 over 60 – “Very normal, way to go honey – they’ll be sending you home again shortly”. I know damn near every nurse in CNY on a first name basis. “Hey, I’ve taken care of you before – I think it was in January of last year, no -it must have been in April? weren’t you in for a blood infection or something – I have my very onw soap opera – I think I’ll call it “As the Worm Turns” – The staph worm if you need some help.
A nice opening cartoon for the book is a drawing of me sitting up in hospital bed, eating my plateful of peas and saying “Hmmm, that 106.4 must have kilt off …..a few braiiiin celllls, as I miss my mouth.”
When I get some time, I need to transcribe my notes from Dr. Re Re center and see if I can find a publisher who might be interested in binding this masterpiece. If someone would put a cover on “Dr. What’s His Name’s Mere 100 Days”, there ought to surely be interest in my enduring (or is that endearing) saga. Heck, I’ve read about others who have been kickin this thing’s butt for over 20 years. What’s so special about 100 days anyway?
I’ve also taken to chronicling my entire life and actually started that once quite a while ago and will probably add it to the fodder. Who knows, I could call it “From an Ace to an AA” (I was a pretty fair B-Ball and F-Ball player for the “Mighty mighty Appleton Aces” way back in 1964-66 and still a legend in my own mind. – It could start like this – “Born on a mountain top in Tennessee, killed him a bar when he was only three. Davy, Davy Crocket, King of the Wild Frontier – That’s the second song I every sang all by myself.
The first song I knew was “There was bullfrog, he was sittin’ on a track singing Polly Wolly Doodle all the day. He was pickin’g his teeth with a carpet tack, singin’ Polly Wolly Doodle all the Day Fare Thee Well….. One of my earliest memories is sitting on my mother’s lap whilst my dad went up and down the hills and between the corn rows of an Iowa gravel road kicking up dust that could be seen way over to Uncle Charlie’s. Mom was softly singing Polly Wolly Doodle and stroking my forehead – I had probably just whacked myself on the side of the head bouncing around in the back seat of the Nash Rambler with faithful sister Martha and little brother Greg. We were on the way to Great Uncle Clarence’s or maybe Betty and Al’s for some Oyster Stew and a look at the farm animals and a visit to the Outhouse. As a city slicker, I especially enjoyed the trips to the Outhouse. YUK!
Detour – This from the morning paper – CGH loses $6.9 Million for the year only to be outdone by it’s acquirer Crouse Hospital who loses $20 Million. How can a Board of Directors in it’s collective Right Mind, allow a loser like Crouse to take over CGH and run it into the ground? It’s easy to see why they are losing money, just take a stroll down any unit hallway and could the useable bed spaced vs the number of rooms allocated to “Staff Only, Linen, Kitchen, Head Nurse, Electrical (They need a whole room?), etc. etc. etc. 40 square feet for patients and 60 square feet for whatever.
And then take a gander at the number of people standing around jawing about the earthquake – What are these people supposed to be doing all day long besides keeping the patients awake -don’t get me wrong, there are the exceptions who are bustling around doing their jobs but far too many are just occupying space and getting paid to do it (could that be where the extra million or so go?). My, but we are caustic this morning Mr. Lande. Hey – I’m gettin old, I can say what I want, when I want, where I want. As my good buddy Jack alwasy says “Sometimes the best people can do is to be an Asshole and if they are doing their best you gotta love ’em” Poor paraphrasing – I’ll have to get it right from him.
I have also decide that after 35 years of earning a living, putting three kids through college and doing the right thing I am taking the summer off to enjoy my family and friends and play golf when I am able. I may not be here next year at this time.
I am sure lively this morning – must be ready to go home! I hope I’ve made you laugh (and probably cry a bit also) with this latest tirade.
Some extra sub-titles just for the grin of it:
“Good morning Mr. Lande, which arm shall we poke today?”
“Who is that masked man wandering up and down the hall and where is his faithful side kick Peeter Pole?”
“How would YOU like your Potassium, IV (burns like crazy), K-Dur a pill the size of an unshelled peanut.” How about, Not at All? Who needs Potassium anyways – Isn’t that what you get from bananas – How about a barge full of bananas instead.
April 24, 2002 Retired and Loving It (Back home again for those who wondered)
I have decided on a new strategy and outlook towards what I used to refer as my curse. It is now a blessing in disguise. I had always wanted to retire early (at 50) so here is my chance. Albeit a bit forced, I am now officially RETIRED. There is a sign on my office door to prove it; I get no more paychecks; I don’t answer the phone unless I feel like it and I rarely, if ever get out of bed before 11:00 (that’s cause I’m strapped to Pistol Pete the Pole Cat trying to rid myself of the Big Iron.
So, here’s the new drill.
Awake at 6:00 – 6:30 – Have a leg cramp or two just to remind yourself that you are not normal.
Jump out of bed trying to release the cramp – Whooops, you forgot you have a low volume of blood so please don’t trip over Pistol Pete as you stumble around in the dark. Ah, there, I can walk again.
Sue says – “Are you alright?” She knows better cause she’s been livin’ with me for over 30 years. Of course she and I both know ‘this too shall pass’, but it’s agonizingly painful when it hits.
Once I recover from my alarm clock, I decide to set up Pistol Pete for my daily dose of Desferol (2 grams please, light on the iron and I’ll maybe dose off while you do your thing. See you again about 9:30.
7:00 – If I have not already gotten the morning paper, Sue brings it to me with a smile and a peck on the forehead (No lip kissing before Mr. Tooth Brush). I work the daily crossword puzzles like all ol fart retired guys and she is off to work leaving me to the remainder of my daily routine – Hey, somebody’s got to earn a living.
8:30 – Get an IV “push” of some new wonder drug – this time it is Ceftriaxone (a broad spectrum antibiotic) Don’t I sound just like a nurse? I’m really gettin’ this lingo down now. So what is an IV push you ask – You stand on your head in the corner, place the your feet firmly against the IV pole and “push”. Oh no actually, you gradually push the ingredients of this big syringe full of medications into your IV or catheter or whatever it is you have hanging out of your arm or chest or feet or wherever they decide to stick it this time – I could tell them where to stick whoops got carried away again. Speaking of IV’s and all that, they are giving up on me as a permanent type catheter person. Too may infections for one year if you don’t mind. So now I have a temporary “peripheral IV” (sounding like a nurse again) – the kind they stick most of the population with when they go into the hospital for normal IV stuff. I have a new friendly nurse (let’s call her Susan) who will come replace it whenever it falls out. (She probably doesn’t know my track record or she would not have signed on for this “home care” duty). Yes, that’s right sports fans, I now have to be poked at least every 5-7 days for a new IV cause I am “permanent catheter resistant” or PCR. Wasn’t I talking about retirement?
9:00 – IV push done, lines flushed (sound like a plumber now) and ready to begin my daily walk in the park. Since it is Syracuse and the weather only gets up to 60 or higher 3 days a year, this really means circling my expansive LR, DR and kitchen metro-plex about 7,482 times to make a mile (It’s a short putt from one end of the house to the other now). Do I sound bitter about our new house. Not me, I’m just happy I still have a shirt on my back after the “broker boys” finished with me. I just got a phone call from my new replacement broker who informs me that if I want to get what is left of my once reasonably healthy nest egg, I have to pay them even more money. Those assholes are unbelievable. They got me going, lost over 50% of my retirement and now they are going to charge me to get my money out – Morgan Stanley for the record! and just to be an Equal Opportunity Bitcher, (EOB), Merril Lynch did the same the last time there was a crash, er “market correction.” I am very disenchanted about my retirement but have decided to suck it up and face the facts. Instead of jetting between my huge houses on either ocean, I’m sick, broke and eating grains, greens and beans to try to get my life back – what’s to be upset about. Now that I have gotten that off my chest – my doctor (read Sue) says it’s good therapy……….. I actually am going to give the macrobiotic diet another try, eat nothing that a cow would not and look how big and healthy and content they are.
10:00 – Stir up some bacon, eggs grits and hash brows – or more likely some oatmeal – hold the milk and sugar for me. Hmmm this is really tasty (not!) FTR, I am getting used to eating this stuff and once I get all the crp out of mys system it actually tastes pretty good. I can actually taste again. Line up my daily injections ala Dr. Re Re – For today’s campers we have vial of Alpha Lymphatic Factor (ALF) and some tasty tidbits of bacteria, virus and grass. Tomorrow’s menu will include Oris root, foods and some other delicacy only we know about. Also get out your tri-salts niacin etc. a couple of needles.
10:30 – Time for the only benefit of this whole ordeal – My daily sauna treatment: Turn heat to 160 degrees, toast myself for 30-45 minutes lightly stirring until brown or crunchy to the touch. Snoozing recommended. One last ugly thing to do after the sauna, take a shower, load up on the after sauna treats and Oh My God it’s Noon. Time to start my retirement.
Sue just came home from work (detoured to give blood – We AA types thank her and all the fellow blood and platelet givers – We wouldn’t be here without you!)
April 25, 2002 – A visit to the health food co-op
Been there before but just to let everyone know, I am officially on the macrobiotic diet again and bought myself some organic stuff to support my new habit. We’ll see how long I last. Counts and weekly dr. visit were non-events – Going back next week to be re-checked. “Counting flowers on the wall, that don’t bother me at all, smokin’ cigarettes and watchin’ Captain Kangaroo, now don’t tell ME, I got nothin’ to do.”
April 30, 2002 – A philosophical good bye to April
I find myself “philosophic” this morning as we say good-bye to April showers in dreary Upstate New York. I wonder again why I did not make the move to a sunnier climate when I had the chances. What is it that ties me to this “neck of the woods”? For one, it is Sue’s family and for another it is the close friends we have developed over the years. Even when I visit other sunnier climates, I find myself longing for the “home” of Central New York. It certainly has its many drawbacks, but like it or not, it has been home to us for now over 20 years and likely will be forever. And so we press onward…
April was supposed to be the month that I looked AA in the eye and said “enough already” – I was planing the cyclophosphamide assault and had steeled myself to accept the negative side effects in hopes of a lasting answer to this bugger, but alas, it was not to be so. Young Dr. Jeff and his faithful sidekick Lucy Lucy said “Not just yet, old fella, we want to you to wait and see if maybe this thing will work itself out naturally. You are looking really good, going longer between transplants and chemo does have its risks and downsides. Go home, get sick again and we’ll talk again in May.” That’s not completely accurate in it’s paraphrasing, but it is what happened! So, I got sick again, learned about IV pushes and am back to spending my days chelating, in the sauna and other nasty things. But, I do feel reasonably well on the au natural diet and have some level of hope that maybe this will work. I read about some successes on the AA/MDS list serve with Homeopathic/Natural strategies so will “buck it up”.
Last night we had ground sesame, almonds and beans over rice with a little Kayl to brighten it up – Yum! The day before, I made the ugliest beet based puree you would every want to see, but it actually tasted pretty good. So, for the record, my diet is as close to a full blow macrobiotic as I can stand. I have various greens almost every meal, beans of some kind and a healthy portion of rice, kashi or some other exotic grain that we discover. I eat a limited amoung of vegetables and some fruit but try to make sure everything is “organic” – i.e. no pesticides or unnatural fertilizers used in the growing process. The theory is that if I do this for six months, I will rebuild my immune system and if will stop inappropriately marking my platelet cells for destruction. If I can last on this thing for six months, I deserve to be cured and a medal besides. My cravings are become a little less obtrusive, but I still miss many of my old favorites, like a good burger, french fries, a chocolate shake, pork roast, roast turkey, ice cream, fried eggs and ham, oh what torture to have to list these things! (Just kidding, I really don’t miss them as much as I anticipated)
So now for the philosophical look back. When I first started with this disease, I went through the predictable – why me?, I can beat this thing, Hopelessness, Despair, Anger etc and settled in on – I am going to take charge and figure out how to win the battle. The good news, I am still here fighting and actually have a lot more energy than I didi before. The bad news is that I am still transfusion dependent and am easily fatigued. Most days I maintain a pretty positive attitude supported by Sue, girls, sons-in-law, family, friends, medical caretakers and the people who send encouraging notes to the ol’ grizzled and scarred webmaster. I also read the AA/MDS list serve regularly and see lots of positive reinforcements there.
I also decided that I needed to get my life in order. I needed to rebuild my neglected relationship with my wife, my family and God and needed to get my financial affairs in order. I had become almost completely focused on trying to build a company at the expense of virtually everything else. If this AA thing was intended to be a wake up call, I heard the alarm and began a frenzied effort to set things right.
I can now happily report that my relationship with Sue is strong, I have rebuilt relationships with family and friends, have my spirit intact and have at least weathered the storm financially.
I consider myself one of the lucky ones in that I got on disability early, got my financial affairs in order and am free to focus almost exclusively on fixing myself. I look forward to the day when I may again rejoin society but figure I have paid my dues and deserve this chance to focus entirely on making myself well. I feel for the many other AA types who are still struggling with everyday lives, raising children, doing the 9-5 routine or maintaining a household. Their lives have to be much more difficult than mine. I guess I complain a lot here just to get it off my chest because in the long run, I do feel fortunate to have such strong support from Sue and others. They keep me smiling and give me the much needed “kick in the pants” on days when I get feeling sorry for myself.
One thing that continues to strike me is the comment “but, you look so good”. It is both a blessing and a curse of our disease that we may look good, but we all know that there is definitely something wrong ’cause we spend way too much time sleeping and feeling down than is normal. We also know that our blood is not doing what is supposed to do and the weekly Dr. visits serve as constant reminders that we are at best just holding this ugly monster at bay. Another observation is that there are far too many “quick cures” out there than seems reasonable. Everything from shark’s oil to alfalfa greens have been recommended to me. I sometimes wish I could try them all, but really feel like I need to choose one approach and stay with it. Everyone means well (I hope), but it is rally hard for me to believe in anything at this point. I am beginning to believe that a healthy lifestyle is the absolute key and virtually anything will work if you do the fundamentals. Kind of like football – if you don’t do the fundamentals like blocking and tackling better than the other guys, then it doesn’t much matter that you have a couple of “Hail Mary’s” every once in awhile.
I am at peace with myself and God. That bothered me early, but I have a strange inner calm about my mortality. I hope that I will be around for a long long time, cause I enjoy so many things about this life. But, I have accepted the fact that I will not live forever and have come to terms with my own inner beliefs about God, eternity, etc. I prefer to keep much of it personal cause it is between me and God, but rest assured that I have the inner peace I sought when first confronted with this disease.
I still struggle a bit with our financial position. Yes, we have it under control and we are a lot better off than many others, but…. I always wanted to “hit it big” and got pretty close a couple of times, only to have the roof fall in. The events over the past five years (both personal and public) have been financially catastrophic. I am not sure if I can ever rebuild our nest egg to what it was, but have finally accepted the reality of it all and am trying to figure out where to go from here.
I have far too much time on my hands and continually prod myself to get off my butt and volunteer at something but just can’t seem to get it going. I will continue to search out ways I can use my talents to help others. I would love to figure out a way to use my music, but have not yet been able to determine how that may be.
Sue tells me I should formalize all my ramblings into a book and I would like to. I have tons of notes and journal entries that need to be captured, edited and organized. I used to be pretty good at that sort of thing, so will take a pass at it I guess.
OK, that’s it for the philosophical look back. Bye
May 2, 2002 Collapsing Veins, Hot Packs, Infections and the Proof is in the Platelets
Now that I am “Piccless”, I have a new issue. Went in for platelets yesterday (8000) and before I was done, had been poked five times, hot-packed twice and finally had success. I can actually see my veins shrinking away from the needles! I see other people’s veins running through their skin and mine are nowhere to be found. And, now we are having a heck of a time settling on a diet that makes sense. Sue is desperately reading all kinds of stuff and discovering that leafy greens are no longer a good idea cause they are high in iron (last thing I need is more iron). Also thought lentil beans were good but they are actually used as a natural blood thinner. And on and on and on. I was trying to do a rotational macrobiotic diet but that is beginning to look like a bad idea so may go back to a regular rotational.
So, had a nice talk with old Dr. Jeff (the one who saved my life), yesterday and he says the following: The staph infection could have closed off your heart valves – you were lucky to get it under control in time. So – for you AA types out there – at the first sign of infection (fever over 101 – get your ass to the hospital and make sure you get somebody on the job who knows what they are doing – request to see the Infectious Disease Dr. or make sure your hematologist is involved). I would be willing to bet that many of those we read about who go into the hospital and do not come back out are not treated quickly enough for these deadly infections.
Also talked about the latest BMB results. He talked with Young Dr. Jeff and they discussed the results. Rochester apparently is seeing some minimal improvement in the cellularity of the marrow, but Old Jeff says they’re groping. He says the proof is in the platelets and they have not shown ANY signs of improvement since the beginning. I am seriously leaning towards cytoxan or BMT, but have to give this alternative life style a chance. October is my new deadline unless something else happens. Oh – some good news, it’s still raining in Syracuse so at least I wouldn’t be able to golf anyways. Old Jeff says I should try to stay active and at least try to play some golf – all I need is a sunny day – Maybe in June.
May 5, 2002 – Big Swing even in One Day
Felt really lousy the past few days – hardly left the house and pretty much just moped around feeling sorry for myself. Then today, Sue and my buddy Jack gave me a good kick in the pants and made me go to the golf course. Wow – it felt great, I did OK and feel like maybe I can do this thing. Put in a full day of sauna, golf, cards, dinner out with friends and here I am at 11:54 still going. My heart really pumps hard if I over-exert, but I just have to pace myself and enjoy what I can do. I never really liked riding a cart for golf, but it that is what I have to do, then so be it. Besides, I have to get ready for the 2nd Annual Bruce Lande Open on August 4. We raised nearly half the money needed for the Dr. Re treatment last year and hope to make up the difference this year. Life is good!
– Snakebit or Anything for Strokes
So the ER doc says – “They call that a ‘divot’ when you hit under the golf ball – and how did you get it in your eye?” And I say, “It wasn’t easy Doc, you wanna play for money?” According to friend Jack, I will do anything for a couple of strokes and friend Mark who came to my rescue says I’m snakebit.
There I was on the 14th hole taking the advice of Old Dr. Jeff to be more active and I take a swing at my golf ball propped up on a tuft of grass and hitting a little behind the ball – well maybe a lot – I splash this big chunk of mud up into my eye. New friend, Joe Duffy takes one look at my eye and immediately carts me to the clubhose (as far away as I can be from there by the way and a long walk without a cart. (Yes, from now on I will be using a cart -as much as I would prefer to walk, I could only make it about 1 1/2 holes yesterday on my own). So I gets to the pro shop and there are Mark and Bill looking at me like “What’s next out of this guy?”. Mark washes out my eye and says we’re going to the hospital. I had not yet seen my masterpiece so I had a hard time understanding all the fuss. To the CGH ER to see my old friends (Ran into Annette, Bob O and Sue P.) and they all have the same look of disbelief. “You were doing what?”
Doc comes in and takes a look and says in his best imitation of Groucho Marx (looks a bit like him actually and just as funny), “You have what we call in the trade a Subconjuctival hemmorrhage.” I finally go take a look for myself and I look like I’ve been in a brawl. What used to be the white of my left eye is all swollen and blood red – Blood?! – Oh my God, I don’t have any platelets. “Not to worry”, says Grouch, “If you were bleeding, your vision would be blurred, but I’ll call my buddy Jeff just in case.” Old Dr. Jeff, says “Give the boy some platelets, you know how those AA types are, might have another bleed to the brain or something. And Oh, by the way do a CBC on him.”
So, my day of activity turns into another “health care extravaganza” per Dr. Manfretti (you know him as Groucho) and he even gives me a hand drawn picture of my eye for posterity. Pretty much a normal day for a normal person doing something stupid, except for the platelet episode. Back on the golf course by Wednesday or Thursday with protective eyewear.
Dr. Manfretti, says I should take up tennis: “It’s safer and it doesn’t take as long.” But will I get strokes?
May 11, 2002 – It’s All About Choices and Hoping for Magical Advances
At the risk of repeating myself, I decided to capture my thoughts regarding the choices we face as AA types. In the beginning, we have to simply make the choice of how we will react to the news. Why Me? What did I do to contract this weird thing or worse yet, have my child be afflicted with this ugly thing. It is time to reset my life and my priorities. I need to spend more time with my family. I need to rebuild relationships that were important to me. (Later on it became very important to me to make sure I am around to get to know my new grandchild.) And the simple pleasures of being with the woman I love, our family and friends.
Will we be victims, or will we fight? If we are going to fight, how will we go about it. One of the first questions a doc will ask – do you have any siblings? Have tme HLA typed for the possibility of a sibling BMT donation.
If I don’t have a sibling match, what next? Do I go for a Bone Marrow Transplant right away? What are the odds of success? Could I die from this or be worse off than I am now? Should I try other medical treatments? What are they? ATG? What are the side effects and are what are the odds of success? If the ATG and cyclosporine protocol does not work. Should I try it again? What makes me think it will work the second time if the first time just made me sick and gave me my first real bout with death? Should I eat differently? Exercise more? What about my life – family, spiritual, financial. What is to become of my family if I am not here? If ATG # 2 does not work – then what. There are lots of other somewhat experimental options and maybe we need to look into alternative treatments. They start coming out of the woodwork and all by well meaning friends, family and associates. How about this supplement, or that one, or this diet, or that one or you need to chelate the harmful chemicals out of your body, but be careful because chelation is very harmful to your organs. And if you eat too much of this food it will cause this problem. Man, it gets really complicated and confusing and you really don’t know who is right or wrong.
Should I consider a stem cell transplant – will it work for you? How about T cell depletion, or maybe a chemo therpay (cytoxan or cyclophosphamide). Maybe now is the time to really seriously re-evaluate the Bone Marrow Transplant with full irradiation but will I make it through such a procedure? And even if I make it through, what will my quality of life be like? Should I just be satisfied with the existing quality even though I have no stamina, am transfusion dependent and risk dying from an infection (2 close calls already).
My choices used to be to got to the movies or out to dinner or business decisions that seemed important at the time, but pale in comparison to these truly life and death decisions.
If nothing that medical science has cooked up appears to be working, I will venture into the world of “alternative medicine”, but wow – talk about a pandora’s box. Consider this short list of alternatives to explore: macrobiotic diets, herbs, shark’s oil, alfalfa sprouts, juicing, vegen, holistic, homeopathic, religous focused, accupuncture, yoga, sauna, chelation therapy, oxygen therapy, every diet ever invented, chemical sensitivites, etc, etc, etc.
Then how about ongoing research into genetic re-engineering and the other medical research that is targeting much more prevalent diseases but may have a spill-over effect on AA and MDS. Or maybe I can do my own research and find something that the researchers have missed when it comes to AA specifically – (Been there, doing that, have the T shirt and ball cap). The research is done on mice and the likelihood of this research impacting us in time to save our lives appears to be pretty remote, but I continue to press on hoping that there is something somewhere that will have an immediate impact. Maybe in Canada? Or China where they have many years of experience with blood disorders? Should I eat more rice or less or rotate my foods?
Should I try another catheter to avoid the almost daily poking of my collapsing veins? Is it time for the dreaded sub-cutaneous desferol infusion pump. Many on the AA/MDS list server have been doing this for a long time and I had hoped to avoid it. It is beginning to look like I no longer have a choice. The desferol is an absolute requirement to keep the iron from transfusions from being absorbed into my organs and causing irreparable damage. I remember reading about this early on and thinking that when I had to do this I was in big trouble. Am I, or does this just become something similar to what diabetics have to do?
Virtually every day is now consumed with these choices. And some days, I just want to forget it all and go and try to live my life without these constant reminders. So I do that, and lo and behold, something happens to shock me back to reality or I do my 4-5 hours or treatments and what else is there to do but think about how to beat this bastard!
And since we are on choices, what do I do with the rest of my life? How long do I have? Is it many years or am I kidding myself? I read about fellow AA types dying on a fairly regular basis – some do BMT’s, some do not – most within a year or two after contracting the disease. So, if I only have a limited amount of time left, what will I do? In my case, I have the luxury of retiring early. My wife works full time and I have social security, but I wonder about others who do not have this option. And do I try to do something more meaningful with the time I have left or do I try to enjoy the time I have left. More time with family and friends. More golf – I really loved golf in my early years but had put it aside a couple of different times to pursue career and business interests. OK – Golf it is! And we might as well go full time and move south in the winter. Thanks for letting me sort all this out in public. As reported previously, I will give the special diet and Dr. Re Re treatment protocol until October and if nothing has changed by then, I will opt for cytoxan. Meanwhile I will be visiting my new grand child, spending time with my wife family and friends, on the golf course, or implementing my latest theory of how to make money on the stock market.
May 12, 2002 – Not Normal
I’ve know for a long time that I am not normal and my family will definitely second that thought, but I have often wondered why my heart seems to really go whacko sometimes and I believe it is arrythmia which in my case is being caused by, among other things the desferal, a lack of potassium ( I sometimes take K-dur to summplement potassium) and the low blood counts causing my heart to work harder to get oxygen distributed to my body (especially larger muscles when I try to exercise.) If I try to exert myself, my heart starts pounding like it wants to jump out of my chest and it also feels like it is skipping a beat at times.
May 21, 2002 – Ho Hum
After some excitement of late, I have hopefully settled into a ho-hum state for awhile. Eating rotated macrobiotic/vegen diet, taking shots, checking for blood counts and transfusions seem to be about the same. I could actually live like this. I still can not exert myself and I get tired pretty easily but it beats the infections etc. I started on my sub-cutaneous desferal pump today and it much simpler than I had imagined. The pump and a week’s worth of medicine are housed in a small electronic device about the size of my first palmtop computer. It’s actually pretty slick and painless. I stick myself with a needle about 1/2 inch long, connect the tubing and let it ride for 9 hours. I slept with it in and did not even really notice it.
May 31, 2002 – Ho Hum Ho Hum Ho Hum
I’m settling in to a routine and like it. Guess I can now graduate to helping others. Feel free to write or call me anytime and I will help in any way I can. Phone is 315-425-1162 and email is email@example.com
June 3, 2002 – Did We Tell You We Are Grandparents
Sue and I, and then Melissa spent several days with Joshua and the proud parents. He is undoubtedly the brightest, best looking and most well behaved child ever – Just ask his Grandma! As Yoda would say – Proud, we are! I hope to be around to take him to his first Star Wars movie.
Sue and I played golf on Sunday. Jack, Mark and Jim and I played on Monday. A year ago at this time, walking was an event so I am grateful for the opportunity to have been on the course. I played like a stiff, but then buddy Jack reminded me that I was “able to sit up and take nourishment” and should be thankful for that. Even though we played terribly (4 X’s between us), we decided it was a heck of a lot better than walking an IV pole in the hospital!
On a sour note, I have the old “blood in the throat” symptom and have some pretty prevalent petichia around my middle (the stomach muscle). Was hoping to skip the doc this week (platelets were about 20 last Thursday) and stretch out the TBT (Time Between Transfusions) but not sure it would be the wisest move I could make. Guess I better move my appointment in from after to before the week-end. Those of you who are patients know exactly what I mean. It is a scary event to consider going through a week-end without your trusty little platelets safely infused.
What IS that beeping sound? It sounds like an alarm clock – I’m already up at 4:46 AM so it can’t be an alarm clock. Oh, it’s my sub-cutaneous desferal delivery pump warning me that I only have another hour before I am done. It starts beeping when there are 4 units left out of 18 so if my calculations are correct, and I started at about 9:30 PM, then wake me at 3:30 AM it will – Thank you Yoda for that bit of wisdom. But here is the question then, was it the beeping that woke you or the cramps in your legs? No, the cramps have not gone away now that it is summertime (and in theory warmer) in Central New York. They are certainly not as bad, but just a gentle reminder that all is not well with the world. See you in Home Tonight in the next couple of days.
Josh’s Gramps signing off.
June 4, 2002 – $41.34 in a Mini Basket????
I have always been impressed how my wife can stretch a dollar but today I am even more so!. I went to Price Chopper and Wegman’s for some organic/natural stuff and came home with essentially one bag of stuff for over $50. Don’t expect to go cheap down the organic aisle! Tried Price Chopper first and couldn’t find anything au natural except a small corner of organice veggies so I bought some for $11 and headed across the street to Wegmans (For you “out of towners” they must obviously be competing grocery stores chains, eh?)
So I gets to Wegmans and there in the virtual middle of the store is this relatively large natural foods sections and I set about picking up the essentials like safflower oil, apricot oil, some boxed stuff (be careful to read the label bubba cause you don’t want anything with lots of unnatural ingredients) — a box here, a can there, some frozed stuff (I know, but sometimes even lazy ol’ me is in a hurry – maybe to get to the golf course? And lo and behold I get to the checkout and I still this friendly young clerk that I’ll take the whole mini basket for $10 – He smiles and starts to beep my food – $10 gone, now $20, how about $30 – Oh my God, Myrtle he’s heading for $40! And that’s that – $41.34 at Wegmans plus the $11 at Price Chopper and they spread it out into lots of plastic bags but I know when I get home it could all fit in one good size double bagged brown bag!
I’m going back to watching my stocks plummet – it’s easier to take! Since my life has obviously evolved into one of utter boredom, I will start keeping track of what I eat on a daily basis and you may visit the New Menu section of this here same website. This is for those of you who are really bored! If you are still working for a living and want the short version – here ’tis – If it has anything in it that you used to like to it, give it up! We now survive on Yams and romain hearts, carrots and rice and beans – but only organically grown stuff.
But- here is the bright side and there is always a bright side – the trip down , memory lane (the meat section) is a heck of a lot less expensive than it sued to be. I’ll take my veggie burger any day (lies are permitted when you own your own website). Good night Luke, Good Night Obie Wan Knobie III, Good Night John Boy, Good Night PAPA, Good Night Melanie, Good Night Josh (wanna see some pictures?), Good Night Grandma, Good M M & M. Good Night Abbie, Good Night Mike. Good Night everyone.
June 16. 2002
Happy Father’s Day to Me and All of You Who Are Lucky Enough to be Fathers (And All of YOU!)
Last year at this time, walking was an adventure and yesterday I played 18 holes of golf with my Son-In-Law, Fred trying to out-drive him. And I will spend this Father’s Day with my three beautiful daughters (Michelle, Melanie and Melissa), my incredible wife Sue, our new grandchild Joshua (have you seen the pictures?), Son-In-Law, Mike and future Son-in-Law Richard is here in spirit. Michelle was just engaged and radiates more than her diamond.
Thanks to you Sue, for making me a Father and to the SEVEN of you in our inner circle of Bruce and Sue Lande descendants. What a remarkable treasure it is to have the love of so many people including my own siblings, their children, Sues’ huge family and our close friends. Dealing with AA has been a blessing in disguise as I finally realize (took a huge bonk on the head) what is most important in life.
Thanks to everyone who reads this for helping me share my feeling and you sharing yours. After my family and friends, I now rate this effort as one of my proudest accomplishments. Hardly a day goes by that I don’t get a note from someone and I appreciate every one of them.
June 20, 2002 – Golfing Up a Storm
Early on , I distinctly remember reading form Neil S at the AA newsletter how he was playing golf (walking 9 holes every day) and saying to myself – “Right, like I will every have the strength to do that again”, but here I am, playing 18 holes several times a week and 9 when I don’t have time for 18. I still can’t walk, but have free use of a cart (bartered their web site) and a lifetime membership that is now getting lots of use after several years of neglect. SO – for those of you who are new to this beast, take hope! I am accepting my new lifestyle and what the heck, I don’t have to mow the lawn or do any heavy lifting and I can now blame all my inadequacies on the disease! The daily desferol treatments, weekly doctor visits and transfusions (3 weeks for platelets and 4-6 weeks for PRBC) have evolved into nuisance status and I try to cherish every minute that I have.
Nephew Kent dropped off some college text books on Microbiology and Genetics so if I can squeeze in the time between my investing and golf, will try to research AA, apotosis, etc. again soon, but only on rainy days after the market closes. I again have Someone to Love, Something To Do and Something to Hope For!
July 19, 2002 – Success is at Hand!!!
I am cautiously declaring success for the alternative strategy. Those of you who have been following my progress know that I was pretty skeptical at times and I still struggle with the regimen, but in my case, I now truly believe that an alternative approach that focuses on cleaning up the immune system is far better than the toxic drugs being prescribed by the medical community. I was sick, sick, sick from all the ATG, cyclosporine etc and have been well, well, well, since starting on a cleaner diet and doing the detoxification process. I am now averaging over two months between RBC transfusions and over 3 weeks for platelets. I have a long ways to go before I would say I am normal or healed, but the first step was to “stop the bleeding” (the pun intentional) and that has been accomplished.
My strength level is virtually unbelievable compared to when I had serum sickness and blood infections from catheters. My only real constraint now is to not exert myself of try to go up hills. As long as I am reasonably careful, I can walk and talk and golf and take out the trash and all the things a normal person would want to do.
So, if you are on the fence re treatments, I highly recommend giving the alternative approach I have outlined a try – It really can’t hurt and you may be surprised at the success. It certainly is much less invasive than an BMT or ATG and you can always do them later if the alternative strategy does not work. I would be more than happy to share my strategy with anyone who wants to know more about it.
July 28, 2002 – That Tired Old Feeling Returns
I have been extremely tired the past few days. Have been sleeping much more than normal again. It must be time for a refill – But, hey it has been over two months since my last transfusion. See the doc on Thursday so will know for sure. My hematocrit was about 28 last time and holding at that level for a long time. I have been following the program pretty well so am a little disappointed but when I signed on for this gig, they told me not to be in a hurry. I am almost a year into the program and see progress but now want to put AA behind me and get on with my life.
We have a new major concern in our lives. Josh’s official diagnosis appears to be Arteriovenous Malformation – this website http://www.childrenshospital.org/cfapps/A2ZtopicDisplay.cfm has details and I will be doing my thing to learn more about it. Melanie and Fred (Josh’s parents) are both very internet literate so have already built up a bunch of information which I am starting to log at http://aplasticcentral.com/Josh/Josh_Intro.htm.
August 1, 2002 OK To Get Excited!
Main Dr. Jeff (Kirshner) says that it is excellent news that I have gone 70 days since needing blood and my hematocrits are holding at 28. I wasn’t sure and was pretty tired on the golf course the other day. He says it was probably the heat and that I need to be more careful than others re to playing in the heat. Although 28 is good for me it is still well below normal (40-60). But net, net is I am making progress with the alternative strategy and he says just keep doing what you are doing because it appears to be working!
He confirmed that any blood cells left over from my last transfusion are now dead and what is in my body now is MINE! I am creating healthy RBC’s and my immune system is not destroying them. Still have lots of work to do but the light at the end of the tunnel is no longer a train.
August 3, 2002 Bubba and the Steep Hill – Happy Birthday to Sue!!
Happy birthday to the love of my life for over 33 years!. You are still my sunshine!
About three months ago, I went for a walk on our new street and strolled down to the bottom of our hill only to discover that I could not make it back up the hill. I had to rest about five times on the way back. Well, yesterday, I went down almost to the bottom and walked back up in one trip! This was after I had already walked 1/2 hour in the morning and about 20 minutes in the afternoon. I decided to give it a try and was amazed to discover that I am actually getting stronger.
August 3, 2002 Documenting What Works for Me
If you have been reading my journal or discovered this in a different fashion, this area has been used to document my progress with an alternative approach to healing my immune system after contracting aplastic anemia. I decided to summarize my approach to save you the reading of the entire section, so here goes:
I was diagnosed with AA in January of 2001 and spent the first six months going through ATG (2x), cyclosporine, steroids and a whole bunch of very toxic medications. I almost died 3 times, got serum sickness, septocemia and finally decided to listen to my wife’s advice and try a different approach. She is a Registered Nurse and has been a patient of Dr. Sherry Rogers, an Environmental Allergist MD here in Syracuse. After hearing of my symptoms, Dr. Rogers recommended that I contact Dr. William Re at the Environmental Health Center in Dallas, TX. I was extremely skeptical about the approach, but after much cajoling, decide to make the trip to Dallas.
We spent about two months in Dallas where I was tested for many different things and was eventually placed on a regimen that I believe is now working for me. One of the primary messages is that my immune system was out of whack and probably had been for many years. The regimen is designed to get my immune system back in balance through the use of antigen shots, a rotational diet and detoxification program which is based primarily on an infrared sauna.
I have essentially developed my own strategy which is primarily based on this regimen but also includes a good exercise program ( exercise at least 30 minutes a day using various stretching, walking and light weights), lots of fresh air and sunshine. I east mostly “grains, greens and bean” which means I eat a lot of lettuce, rice and beans of various sorts. I take a mutivitamin daily, a B complex supplement (may be modifying that based on recent input from Marla), Code Liver Oil, Every day Essential oils and magnesium for my leg cramps.
I am now at a point where I am strongly recommending this approach as I now have a full year of experience. I have gone through many phases and still struggle with the discipline ( I cheat once in a while just to maintain my sanity), but now firmly believe that this “alternative approach ” is the “secret” to my success in battling aplastic anemia. I am not selling any live saving supplements and have no axe to grind. It just works and I encourage everyone to give it a shot.
I will likely decrease my activity on this website for awhile as I am finding other things to do with my time, but if you would like more information, feel free to post question on the forum and I will do my best to respond. I am not responding to personal email much anymore
August 12, 2002 – More on What is Working for Me
I had another very good Dr. visit so am really beginning to believe in my approach. Counts are holding and now I will focus on trying to reverse them rather than just hold them.
A couple of things I often forget to mention:
Importance of daily exercise and sunshine. I do 30 minutes of walking and light weight lifting almost every day and I also make sure that I get at least 2-3 hours of fresh air sunshine every day (not always easy in CNY so will likely be spending the winter in a different climate). I also updated by Vitamin and Supplement intake at http://aplasticcentral.com/Alternative_Medicine/vitamin.htm. I have modified this list fairly extensively based on personal results and input from others.
I am adding COQ10 back and dropping the B complex after seeing that all the stuff in the B complex are replicated in my multi. One thing I had forgotten about is the necessity to take the multi a couple of times a day so will start that today. I also must tell you that I do a daily colon cleansing routine using a coffee enema as prescribed by Dr. Sherry Rogers in her book “Tired or Toxic.”
I also heard a news tidbit the other day that advised against exercising in the AM as it supposedly works against the immune system. Supposedly it is better to exercise in the PM as there is a hormone generated in the AM that negatively impacts the immune system. Will try to change, but the morning really works out better in my routine. Also must mention the change in my lifestyle. I have definitely changed from a “Type A” to a “Type B” and have consciously reduced the stress in my life.
All of these changes and my daily routine are working well and it is time to summarize and synthesize which will be my next project.
August 16, 2002 – Let Me Count the Days
It is a little hard to believe, but it is has now been 84 days since my last Red Blood Cell Transfusion and 24 days since my last Platelet Transfusion. I continue to feel stronger every day and my count last Wednesday actually went up for the first time ever! It is a small step, but at this point a small step feels pretty darn good. Platelets went from 12 to 14 and Hematocrits from 27 to 29 previous week. They first stabilized and now appear to actually be edging up. I am becoming even more diligent on my diet as I am swearing off red meat entirely, having a little chicken once in a while but only as a diversion rather than a major event. I am actually trying to get off that too. I eat loads of fresh and cooked veggies, lots of lettuce, beans nearly every day and lots of rice. I can actually taste the veggies and can eat lettuce without any dressing whatsoever. In the “remember to mention department” – I use only deodorant, no antiperspirant as it keeps the toxins in one’s body. I am diligent about daily sauna and other treatments as described earlier and now take the vitamins and supplements throughout the day rather than all at the same. This allows for better absorption. Still have occasional cramping and continue to tweak the magnesium etc to minimize this problem. All in all, the mood around here is very positive and I am beginning to feel almost normal.
August 18, 2002 – AA Patients = Super Humans
When I was the proud owner of a Hickman Catheter, I would tell my younger friends that I was an alien and that the “wires” hanging out of my chest were plugged in each night to be re-charged. Now I have a new theory. Those of us who have AA or similar diseases are actually “super human” because our blood cells work so much better than mere earthlings. I cut myself pretty badly yesterday and my measly 14,000 platelets rushed to the scene of the accident and performed very well – let me see one of you normal types do that! Playing golf in the high 70’s and expect to be breaking par before too long. – How sweet it is!
August 31, 2002 – Another Month and Battle Scars Discussion
If you have read this far, you know that I have formed a very strong opinion about the use of drugs, BMT’s and other radical treatments for AA. Granted the ATG and cyclo regimen did not work for me so I am certainly slated. Maybe if something had worked I would not be singing this particular tune. But alas, they did not and I reluctantly chose the “alternative approach” as a last ditch effort.
In retrospect, I see that the drug strategy, the ATG etc are experimental efforts to combat a disease that the medical community knows very little about. When they know little about something, they do their best by throwing one experimental drug after another at it. Whats worse, I was subjected to catheters, PICC lines and other stuff that almost killed me 3 times. It was not AA that was going to kill me, it was the negative reactions to the invasions into my body. The catheter and PICC line both became infected causing sepsis (blood infection) and the ATG wiped out my immune system leaving me defenseless to even the slightest bacteria.
I now wear physical scars from the catheters and mental scars from the drug treatments. I have decided that I will NEVER again subject myself to these drugs, a BMT or any other radical treatment. I will fight AA on my terms, using my strategy and truly believe that I have a much better chance of winning the battle using this approach than any drug treatment may offer. If you have AA or know someone who does, I encourage you to consider the lifestyle change and protocol I have described.
As for me, I am regularly playing 18 holes of golf 2-3 times per week, walking up hills, running up stairs and enjoying the company of my new grandson and other family members. If I had stayed with the drug treatments of gone for BMT I would either be dead or have a very poor quality of life. I am angered by knowing that so many others have blindly accepted the marvels of modern medicine only to be left crippled, scarred and dead. I realize that drugs can sometimes be a good thing and that transplants are often a last resort, but I wish that doctors in general would rely less on drugs and more on insisting that we adapt the necessary lifestyle changes. Off my soap box and off to enjoy another day.
September 8, 2002 – Success Continues
Editorial comment: I am reporting my success as an inspiration to others. I am not boasting or “rubbing it in”. I merely want those of you are losing hope to realize that we can beat this illness and at least for now, I am living proof
So…. Yesterday, I arose at 6:30, showered and dressed and arrived at the golf course at about 7:30 AM. My partner- brother-in-law and I, shot at combined score of 72 to tie for the lead in the top flight of our member-guest tournament. We then played an additional 9 holes and are still tied for the lead – I played 27 holes of golf in 90 degree weather and had enough energy left to go out to an anniversary celebration dinner, watch some SU football and finally fall asleep about midnight. Can you imagine? Last year at this time, I could not even walk up six steps without grabbing a wall to steady myself. This morning I arose again at 6:00 and a ready to go at it again.
September 19, 2002 – Counts Stable but Not Going Up
Update on the golf – we came in 5th – just out of the money but I played the full 54 holes. My next challenge is to take the PGA qualifying test on October 10th and then who knows, the title of the book could be “From AA to the PGA!” My counts today were 27 Hematocrits and 14 Platelets. I feel somewhat tired and wish they would start working there way up instead of just sitting there. Oh well, patience is definitely a virtue in this battle. I started working 8 hours a week in the pro shop to see how I handle it. So far, I am pretty tired after only a 4 hour shift! I am also back on the desferol after a brief respite. The ferratin level is down to 800 but they want to see 500 I guess.
October 4, 2002 – A Day in My Life Now vs Last Year – The Proof is in the “Putting”
Wow, what a difference a year makes. Yesterday I arose at 5:30, did my 45 minutes of walking and exercise, took my sauna and other treatments and was on the golf course about 8:00 (in the rain I might add), played about 14 holes bouncing around to avoid all the (other) idiots playing in the rain. Stopped in at the clubhouse to replace a dead monitor and then headed home for lunch of navy bean soup and on to my doctor’s appointment primarily just to have my CBC. Platelets were holding steady at 13.3 and hematocrits are steady at 26.6. Returned to the golf course for another 18+ holes and figure I must have done at leat 36 holes. Hit a bucket of balls to lock in the good swing feeling and headed home to get ready for Poker. Went by the grocery store to pick up snacks and a supply of grains, greens and beans. Played poker til 11:00 and fell asleep around 12:00. That’s about an 18 hour day and I was awake again this morning at 8:00. The day before (Wednesday) Sue and I went out to dinner and a movie with our good friends. For your edification, here is October 3 of last year when a trip to the grocery store was a major event:
Felt pretty weak and tired today – Napped most of the afternoon but beginning to feel a bit stronger again. Now over 30 days since blood but did get platelets on Tuesday (counts were P=10, Hemo=8.3, Hematocrits=24, WBC=2.4, RBC=2.4). Have been doing lots of research and discoverd a similar disease (actually a Dr. Rea patient has it) called ITP. Have also been dissecting Dr. Young article and discovered in both places the mention of bacteria and viruses as potential causes of AA. I had shingles and have been testing positive to bacteria. Will talk to Dr. Rea about it. Other patients are going through ALF and IV therapy which I also need to ask about it. Settling into a routine of grocery shopping at the organic food store ( i do drop by Tom Thumb occasionally for a trip down memory lane), preparing food from scratch and doing dishes like in the old days. I try to catch the 5:30 news but am having a hard time adjusting to that part of the time change. I then spend several hours per day researching and keeping up with the maintenance of the web site. Still nobody else is getting into the research.
It is sometimes incredible to me to realize that I am beginning to return to my version of normal and have the energy to do the things I enjoy. The proof is indeed in the “putting”.
October 8, 2002 – I Got It I Got It I Got It I Got It !!!
Bloodletting is the answer to my iron overload problem:
You can’t cure hemochromatosis by eating less iron. It’s impossible to avoid iron in the American diet. Iron resides in every living plant and animal cell, and virtually all commercials flours are iron-enriched.
Switching to a multivitamin without iron will help. Only marginally. Most multivitamins contain small amounts of elemental iron. More important, vitamin C enhances the body’s ability to absorb iron.
Bloodletting is an outmoded medieval practice. Phlebotomy is the standard of care for hemochromatosis. Once you make the diagnosis, your patient needs to have his or her blood drawn regularly to reduce and keep down her body’s store of iron. Steven Finch
Excerpt from ironoverload.org web page
But then what do I do about the lack of blood cells – Oh, I know, have another transfusion! Round and round and round we go, where it stops the phlebotomist knows.
October 19, 2002 – Counts Remain Stable & I am “Unusual”
WBC 3.5 1.6
HGB 7.3 9.7
HCT 19.8 27.7
PLT 7 15
Stable since May 23 for RBC and Aug 23 for Platelets. Compared to original diagnosis date. Not going up much, but not going down either. Whatever is there is mine and all mine.
In discussing my iron situation and whether or not to continue desferol, Old Dr. Jeff says and I quote: “You are presenting an unusual case. We do not have a lot of experience with patients like you. By now, they either don’t make it or they have been ‘cured'”. We’ll see if we can get the ferritin level down to about 500 and then you can stop the desferol.” Yippee skippee!! Oh, and btw, I played 36 holes of golf in the PAT on October 11 and still had the energy to drive home and stay awake until normal time. Then last Thursday, I did a full hour walk including 1/2 hour outside with “the hill” and five trips up and down stairs. I vividly remember when a slow walk up 7 steps almost did me in and a 5 minute walk was an accomplishment. Made a trip to the natural food store – $50 in a mini- basket – new record for me. Also made a trip to the OPL and strolled the 6xx aisle for about 1–15 books which will add to my research.
October 26, 2002
I recently added and/or updated the following pages that directly tie into the alternative/holistic healing approach:
October 27, 2002 – Update on the Battle with POMCO
(Cross Posted from the Insurance Battle Page)
Finally, The Formal Response
I wrote my letter to the insurance company, AKA POMCO, the “Experts in Self Insurance” on December 10, 2001 and after some initial BS responses and continuing to turn down all the Dr. Rea submissions, they finally sent this letter in October of 2002. Is that almost a full year or have I lost touch with reality?
“Dear Ms. Lande:
This letter is in response to a request for benefit information for “allergy related services” rendered at Environment Health Services of Dallas.
Our recent review, performed by a peer medical consultant, recommended payment for multiple complete blood counts and would and blood cultures, as well as toxicology testing after confirmation that toxicology testing had not been performed. These services, the blood counts, cultures and toxicology testing, have been benefited in full (I think we have received about $1,000 vs about $15,000 of submissions) per the terms of your Health Benefit Plan.
However the consultant noted that intradermal testing and immunotherapy are “clearly not medically necessary or appropriate for the diagnosis of aplastic anemia.” The consultant noted the “discussion of the presence of seasonal allergies and chronic sinus infections affecting the patient’s immune system” and concluded that the skin testing and immunotherapy done were not related to the diagnosis or treatment of aplastic anemia and are not medically necessary.
Therefore, under the terms and liminations of your Health Benefit Plan as noted in our letter of June 20, 2002, no further benefits are available for services rendered at Environmental Health Services of Dallas.
Sally K. Frank, R.N.
Now, I must admit, I feel much better knowing that an unnamed “consultant” and Ms. Frank, the world renowned expert on immunology have taken so long to carefully consider our case (A year?) and in the end, have decided that Dr. Neil Young (the real word renowned expert on AA who states: “More recently, an active role of the immune system in marrow destruction has been recognized. In 1999, most patients can be treated effectively either by replacement of the marrow through stem cell transplantation or by drugs that suppress immune system function…), Dr. William Rea (First World Chair in Environmental Medicine) and Dr. Sherry Rogers (Author of 12+ books on how our immune systems is being destroyed by the toxins in our environment and/or the foods we eat) don’t know what they are doing and we must therefore pay for all of their life-saving treatments out of our own pockets.
Dr. Rea and the preceding referral by Dr. Sherry Rogers (on the insistence of my wife, I might add), saved my life! Sue and I are the only one who really know for sure, because we have been battling this thing side by side for nearly two years. The conventional treatment was not only not working, it was killing me. I narrowly escaped death on four separate occasions while being administered the drugs and other treatments recommended by the conventional wisdom.
It was only after completely detoxifying my system and determining what was causing my problems in the first place that I began to turn the corner. In addition to the life saving efforts of Dr. Kirshner and his staff, I no have to thank Dr’s Rea and Rogers for giving me back my life. I am certainly not fully recovered, but my quality of life has returned to 85-90 per cent of what it was and I have a certain level of confidence that if I get on the program and consistently stay on the program they recommend, I will ultimately beat this monster tagged “Aplastic Anemia”.
When my blood counts reach a level that will provide undisputed evidence, I will again go after the insurance company and this time with a lawyer by my side. I will do it not only for me and my wife but for the countless thousands of others who have been turned down by their Pharmaceutically sponsored insurance carriers. If it ain’t a patent protected drug, it can’t work, can it? (BTW, along the way, I was prescribed and they paid for SMZ-TMP, Celebrex, Propanolol, Metronidazole, Cipro, Prilosec, Lorazepam, Desferol, Diflucan, Vioxx, Cyclosporince, Prednizone, Vankomyacine and a few dozen more). None of that stuff was working and in fact, it was killing me!
I now have two new goals:
1. Become a Professional Golf Association member so I can write my book “From AA to the PGA”, and
2. Get my CBC’s to a level that will provide irrefutable proof that my insurance company is wrong and get them to pay for my treatments.
Maybe I should also thank POMCO, The Self Proclaimed “Experts in Self Insurance” because without them, I would not be as driven. I have always enjoyed a good fight!
“If the oil light on your car goes on, you can always unscrew the bulb, smash it with a hammer or buy a new car. That’s analagous to the kind of medicine insurance companies pay for: drugs, drugs and more drugs.”
Oh and, by the way, if I previously suggested that some of you go to the Patient Advocacy Foundation for help, don’t bother. They are useless! After several weeks of phone tag and useless conversation they opted out on trying to help me. Thanks for nothing!
Releasing my anger and directing it at the appropriate recipients is good for the soul! I feel so much better now, and I will be sending a sanitized version to the insurance company, AKA “The Experts in Self Insurance”.
November 17, 2002 – Just Catching Up a Bit
I didn’t realize it, but it has been almost a month since I update this journal. I guess I truly am returning to normal, but should report a few things. It is getting to be winter in Central New York and I can definitely smell and feel the effects of Forced Air, Natural Gas Heating. I smell it every time the furnace kicks on and wake up in the morning with that old phegmy feeling again. Yuk! Good ammunition for my going south for the winter. I am staying pretty close to my modified grains, greens and beans diet and do most of the cooking now. Because most things are from scratch it takes a good part of my time, but it fills the gaps when the market is flat.
I am doing quite well in the “swing trading” of options department and am anxious to release some money tied up in some dumb early moves. Hopefully the end of the year upturn will allow me to get out of some bad positions. I have a pretty good setup with a cable connection to the internet, ameritrade streamer and a couple of other tools that let me stay very close to the action. I brought up a second monitor so that I can watch multiple charts at the same time.
Over the past couple of days I cleaned out my sauna room (it was packed with junk left over from the move), cleaned the laundry room, did the laundry, made about 50 trips up and down the stairs and a ladder to the garage attic. After about 3 hours of non stop work, had to rest for a bit. I let my heart catch up a bit and went right back to work and even had enough energy left to rake some leaves. WOW! What a difference! My counts are still lower than a normal person, but most of the time I feel pretty much normal these days.
I am still following my daily regimen which takes nearly 3 hours from start to finish but it is well worth the effort and I look forward to the day when I can report that my counts are up to those of a normal person and I am back!
P.S. I really could live like this forever, but have this nagging concern about the counts and what might happen if…
November 30, 2002 – A Belated Thanks
I’m still a bit slow on the uptake, but will use this time to say Thanks to All of You who continue to keep this site alive. We now receive an average of over 500 hits per day. Not bad for a site that doesn’t sell anything, have any pretty pictures (unless you count the rabbit man) or tell you what the weather is going to be like today. I could probably add that but here’s an easier one – It is cold and rainy in Syracuse again today – Repeat that for about 200 days per year and you’ve got it. I’m going south for the winter! So where was I? Oh, yeah. Thanks to all of you who continue to stop, add your comments, send me emails and the continued words of encouragement.
We had a very nice family get together at Grandma’s house and she reminded me how many people prayed to get me better. So – Again Thanks to All of You, wherever you may be. Within the past few weeks, I have received notes from the Foroyar Islands (45,000 inhabitants on a small island chain between Iceland and Norway), Philippines, Australia, and many other locations. It is great to hear from all of you. Though the reason for contacting us may be sad, the support system is growing every day. My hope is that one day we will all be cured and AA-MDS and Auto Immune Diseases will go the way of Polio!
Happy (belated) T-Day to you Americans and Happy Every Day to the rest of the world
December 1, 2002 – The Book is Finally Coming Together
After several false starts, my long awaited book (by at least two people that I know of), is finally taking shape. I started out thinking I was going to add a new website and suddenly it felt like the book I had been struggling to write. I anticipate filling in the holes over the next couple of days and weeks, but it finally has the structure I was looking for. Sue has been urging me for a long time to capture the essence of the website for non internet users (are there really such people in the world?) and now I am well on the way. And speaking of Sue here is her first formal comments for the rest of you: http://aplasticcentral.com/Sue.htm.
And now for the news: I just received letter number two from the IRS stating that we owe them $9,000 for an early withdrawal from my IRA that was essentially used to pay the doctor bills our insurance company would not cover. Just when I was beginning to see the light, I get hit with this. Bastards! I have paid more taxes in my life than most people earn and now when I am in trouble they want to take a sucker punch? After the first letter, I sent off a lengthy letter explaining my circumstances and their response basically ignored my letter and said Pay up, even if we have to deduct it from your disability check – what am I missing here? One branch of government is helping me to stay alive and now a different branch wants the money back. I think I’ll write a book, Oh I am writing a book, maybe I can use my advance money (ha!) to pay the government.
A new quote for ya’: “When you’ve got ’em down, kick ’em in the stomach ’til they bleed and if they don’t have any platelets to stop the bleeding, all the better.” the IRS
December 18, 2002 – OK, So I have not been honest with you.
One of the pledges I made early on is that I would always share both the ups and downs. Except for the normal battles with the IRS (which we all face), etc, I have only been reporting the upside. Well, like the song says, “Some Days are Diamonds. Some Days are Stones.” I am struggling a bit of late and trying to figure out where to go from here. The most important thing I have going for me is the “someone to love” of family and friends, but there is definitely something missing. I can’t seem to find the “something to do” and “something to hope for” part of the triad of happiness.
I just talked to Sue and as always, she even found a positive spin for my latest dilemma. I am frustrated by the fact that I am “on the dole” with my disability, and can’t seem to find a way out. She says that’s good news similar to getting cranky when you are ready to leave the hospital. I have been nosing around for job opportunities but know that I could never handle the stress of my old lifestyle. I get very uptight even thinking about it. So now my question is: “What to do with the rest of my life?” Again, from a positive point of view, there was a time not long ago, when I didn’t expect to even be here!
But, back on the subject. I am very depressed most days and am beginning to resent my daily routine. Less than five years ago, I had a management position with a good company, we had almost $500,000 in net worth, lived in a nice house, had lots of friends and things to do and I was earning in excess of $100,000 per year. Today, our net worth has slipped to under $150,000, I earn nothing and I sit here talking to myself most of the day. What makes me feel the worst is that for the first time in my life, I am unable to see a path out of the wilderness. This journal itself is just a glorified way of me talking to myself!
Yes, I know I should be happy with what I have and that I am even alive, but I am not! I have had all the free time I can handle and need to figure out a way to get on with my life. I used to dream of having this much free time to do whatever it is that I wanted to do. Now I resent it and have to figure out where to go from here.
This is obviously me talking to myself and I should probably erase it, but oh, what the heck, we’ve come this far together, you might as well have a glimpse into my soul when it is out of whack. Oh, woe is me! It is time for a good, serious, kick in the pants! I have been in a funk for over a week, I need to stop feeling sorry for myself and take some action….But what? What is it that I can do and want to do, now that I have a “new lease on life.” Just like a good TV show that has become interesting, this episode is:
To Be Continued
December 19, 2002 That Didn’t Last Long
Yep, I’m pulling out of it, mostly with help from Sue and just getting it off my chest. I could probably have just skipped that monologue above, but will keep it in the interest of “telling it like it is.” I did go through a longer than usual spell of funk and I am sure a lot of it has to do with the dumpy weather in UPSNY this time of the year. But, I am back and pounding away on the book again. Have a dr visit today. WIll see if the counts are going up or more likely just staying stable.
December 22, 2002 – Hopeful Sign
Counts on Friday were very slightly up for the first time ever. I am cautiously optimistic. Platelets remained the same, but hematocrits have slowly risen from around 26 to now 29 since my last blood transfusion nearly seven months ago. So – maybe we’ll take care of the red blood cells first and then work on the platelets.
Happy Holidays to everyone and thanks for your encouraging notes. Although I get frustrated at times, there is a big part of me that is just happy to be even be here for another holiday season. It is now almost 2 years since I was officially diagnosed, but I know that I had been actually sick for a bit longer and at this time in 2000, walking was a challenge. I thank God for giving me this chance to rebuild my relationships with family and friends and will continue working the website, my book and my new challenges.
Best wishes to you all – When next I write, I may be visiting daughter Melanie in sunny North Carolina!
January 8, 2003 – A Two Year Retrospective
It has now been a full two years since our lives were turned upside down by this ugly thing called Aplastic Anemia. Sue has returned to a normal life, albeit in a much smaller house and as the primary breadwinner. I am currently in North Carolina and feel well enough to have tackled an addition to daughter Melanie’s house. I am doing framing, wiring, sheet rocking and feel surprisingly pretty well. I have to pace myself and still get winded if I push too hard, but it beats the heck out of what I was doing two years ago.
I often wonder if I will ever get my full strength back and sometimes get pretty fatalistic about whether I will make another year. As much as I feel pretty good and can do most things I want to do, I am reminded on a regular basis that my life is not the same. The book is taking shape and I will likely self-publish and also do an Ebook. My hope is to have it in publishable format in another couple of months. It is taking much longer than I anticipated and this project for Melanie is taking a lot of my time right now.
February 12, 2002 – Just an Update
Have not seen a doctor in well over three months. What a relief! Not that I dislike doctors mind you, but it is nice to have a somewhat normal routine whereby I do not plan my life around a transfusion or CBC or whatever. I left the cold and snow of Syracuse on December 25th. Since that time I have been to North Carolina and Florida.
I spent a week on the beach in 70 degree weather in Panama City, Fl. No more Syracuse winters for this bubba. I am now safely back in Raleigh with Melanie, Fred and Joshua. I am feeling a bit worn out these days. Probably need to get back to Syracuse and the sauna. Will be interesting to see what my counts are next visit.
Now have nearly 250 pages done on the book and still hope to have publishable version by the end of the month, but the EOM is coming and I have not written anything for several days. Like everything else I do, I write in spurts.
Not much news on the AA front I guess.
March 1, 2003 Meeting milestones
Yes, the book is in final form – ready for editing, indexing and clean up. Have asked if I can talk about it at the upcoming AA/MDS patient conference inn August. Have not heard back yet, so may call in the next week or so. This will put some pressure on to get it in to final form by end of next month in time to get it copyrighted, printed, etc.
The battle against AA appears to be going well. I still have some days when I am quite tired, but I have learned to cool it on those days. I am making noises about trying to get a real job and will probably stick my toe in the water. I’m not really sure if I can handle it or not, but am a bit anxious to give it a try. Need the right kind of situation where whoever hires me understands my situation.
I am anxious to get back with my wife, but the weather still stinks in the Northeast. I was in Florida last week and the temp was in the high 70’s and low 80’s. I had a glass of coke yesterday and my lip has a red rash on it today. I know for a fact it was caused by the coke because I have tested in the past. My body is telling me that coke is a bad thing!
March 26, 2001 – A line from Good Will Hunting
“You like apples? How do you like these apples!”
Hematocrits of 32.8 and platelets of 18 – I’m on the road to recovery!
April 15, 2003 – Nine holes walking!
Sue and I walked a full nine holes yesterday and I walked none holes today.
May 15, 2003 – On the Road Again
I am happy to report that as of this writing, I am a full time employee of a very excellent company and will be resuming my role as a fully qualified and normal road warrier. I wear masks on airplanes, but otherwise look, act and feel like any other traveling business person. I have my energy back, feel better than I have since high school and thank God, my wife and family and all of you. It is great to see all the activity on the forum and please feel free to use it however you want. I will likely be a bit less active since I have a “real job” now, but will be finalizing and printing the book per my original deadline. I am waiting on some edits from others and hope to have the finished product available before the end of August (or maybe even sooner.) The natrual healing thing is working big time for me and those of you who have followed my story know that I was not always a believer. Today, I am a full time, card carrying believer in the power of prayer, the attributes of the healthy lifestyle I have documented here and the belief that AA can be beaten! Hang in there and keep on keepin’ on!
SAA 1/2001 2X ATG failed
Now back to a full time regular person 5/2003
September 4, 2003 – Just an Update
Doctors visit yesterday. Nothing out of the ordinary. Counts are stable. I feel good most of the time. I quit my job because I was not getting paid (commission only based on dollars collected and the delivery people were not doing their job) so am looking again. If any of you out there know about an opportunity for a very good one on one sales person, let me know. Interesting to see that we are receiving over 1000 visits per day on average. Pretty cool, eh? I continue to receive at least 1 -2 queries per week from all over the world and respond as best I can. I am golfing on a regular basis (walking and carrying my bag), exercise at least 30-45 minutes per day and with my docs blessing am “getting on with my life.” Book proof should be here any day and that will be printed. Delivery expected mid to late September.
September 30, 2003 – Sick for the first time in two years – and I know why!
I am battling a severe sore throat for the first time in over two years and it is because I have gotten careless. I have not been following the regimen as religiously as I had been in the past (have gotten very sloppy about what I eat and not exercising as well as I should). When will I ever learn!
September 26, 2004 – For those who like to skip to the end before reading the story
Oh ye of little faith. The alternative approach worked and I am as healthy as a horse. I sincerely doubt that I would still be here if left to conventional medicine. I am and will be eternally grateful to my primary doctor who saved my life and my wife, family and friends who then nurtured me back to a normal way of life. I must give solid credit to Sue Lande, Dr. William Rea and Dr. Sherry Rogers for their steadfast belief in the healing power of the human body. Although it is a constant challenge to stay on a discipline, I firmly believe that my alternative regimen as well documented on this site made the difference between life and death for me.
So, an update – Doctor’s visit this week – Platelets are still not responding and white counts are a little low but everything else in cluding the Hemoglobin and Hematocrits are NORMAL! DO YOU BELIEVE IT! Were it not for the fact that I had the blood work done, I would probably not even know there was anything wrong. Jeff Senior affirmed that I can look forward to a long and happy life, saying:
“We can’t explain what has happened, but whatever you are doing appears to be working so don’t change a thing.”
I am now working with a great partner doing business development consulting http://nmsgrowth.com and doing my best to enjoy each and every day – Must go, my grandsons are calling!
Still going strong on 2/7/05
And even stronger in August of 2005. Playing golf 3-4 times a week. Having a ball with our business development partnership and planning a move to North Carolina before the snow flies.
9/29/05 – Slipping backwards after a long period of stability.
After many months of stable counts, mine are retreating. I had become a little careless with my regimen and am working to get back on a program so this will be a good test as to whether or not my protocols actually work! I’ll let you know how it goes.
Here are my most current counts:
WBC 1.7 2.2
HGB 9.0 11.9
HCT 27.0 34.9
MCV 117.0 112.0
PLT 17.0 20.0
The good news is that I am alive, the bad news is that I can feel myself getting weaker again and with these levels any normal person would get back on the transfusion wagon.
May 1, 2006 – Journal moved to http://aplastic.livejournal.com.