|Aplastic Anemia and other Autoimmune Diseases
“Help Your Body Heal Itself”
Help your doctor cure a life threatening illness by taking care of your body, mind and spirit. Develop a Personal Wellness Plan and take charge of your Aplastic Anemia, MDS, Cancer or other Autoimmune Related Disorder.
In this book, you will learn how to:
“Bruce relates his own story of his battle with Aplastic Anemia. He successfully describes complex medical situations in terms easily understandable by a layperson. Most importantly, he describes his own experiences. It is a remarkable story with lessons for all who are fortunate to read the book. Dr. Jeffrey A. Kirshner, MD
“Aplastic Anemia and Autoimmune Diseases is a must read for both AA patients and caretakers alike. It is a valuable addition to your arsenal of knowledge for your use in conquering aplastic anemia.” – Marla Brown, AA Patient & Alternative Medicine Advocate
“It made me cry.” Liz Walker, a trusted friend of the Lande’s
“This is a great example of the potential that each person possesses who’s willing to take charge of his health. Bruce has begun to unlock the healing power that God has programmed into all of our bodies.” Sherry A. Rogers, M.D., ABFP, ABEM, FACAAI, FACN Author of Detoxify or Die (prestigepublishing.com)
|Forward From Doctor Jeffrey A. Kirshner
I remember very clearly my initial meeting with Bruce Lande in the Emergency Department of Community General Hospital. I was called to see this previously healthy man, who was found to have pancytopenia (lowering of all his blood elements). As expected, Bruce and his wife were shocked and scared about the findings, the possible diagnosis and what was in store for them in the future. I could also sense that I was dealing with an extremely bright and determined individual, who was going to do everything in his power to beat whatever disease we diagnosed.
As the events unfolded, my senses proved correct. We eventually diagnosed Bruce as having Aplastic Anemia, a most serious disease that is very difficult to treat. Conventional treatments are not always successful. Bruce was an exemplary patient from the beginning. He really did his “homework”. We tried all the usual medical treatments with a limited amount of success. He required frequent transfusions of red blood cells and platelets. There were numerous hospital admissions for treatments and complications of both the disease and the treatments. These were very difficult times for Bruce, his family and his friends.
Bruce’s story is remarkable. He used his computer skills to set up a Website and do his own research. He interacted with other patients with this relatively rare disorder. Through the help of his family and friends, he sought and found complementary and alternative methods of treatment. He never abandoned conventional medical treatment;. he successfully integrated both traditional and alternative therapies. He never lost his faith and to this day continues to live relatively successfully with his disease.
Bruce’s blood counts have not returned to “normal”, but Bruce has. The blood counts have risen to the point where he is no longer requiring blood transfusions nor hospitalizations. It is unclear to me how much of a role each modality has played in the improvement of his condition. In reality, it doesn’t matter at this point, as Bruce continues on with traditional and complementary medicine and his strong faith. As Bruce’s physician, I am challenged to integrate all these modalities. It has been a learning experience for all of us and I feel fortunate to take care of such a remarkable individual.
In this book, Bruce relates his own story of his battle with Aplastic Anemia. He successfully describes complex medical situations in terms easily understandable by a layperson. Most importantly, he describes his own experiences. It is a remarkable story with lessons for all who are fortunate to read the book.
Jeffrey J. Kirshner, M.D.
We all know about diseases such as cancer, diabetes, and heart disease. For decades, countless books and articles have been written documenting research and hypotheses for dealing with these common diseases, for which a quick search on the Internet will reveal thousands of hits. Yet, in October of 1999, when I was diagnosed with aplastic anemia (AA), there were far fewer links on the Internet providing information on aplastic anemia. The amount of medical articles in the field of hematology available to the public on the subject of aplastic anemia was scant.
How was I to survive this disease or even make intelligent decisions regarding treatment when so little information was available? No friends, family or acquaintances had even heard of aplastic anemia. Even my own hematologist said, “I’ll get back to you after I look up the treatment protocol for aplastic anemia.” What kind of a disease was this so that my doctor had to “look up” the treatment? Is it that uncommon? As days passed, I continued to be more and more perplexed with tests and test results. What did all these tests mean?
Like other patients, only through hours of searching and reading was I able to piece together the information I needed to understand my condition and my options. Doctors gave some answers to my many questions, but I felt that they were as confused as I was. How much easier it would have been if all the information had been in one place!
In 2001, I discovered Bruce Lande’s website, http://www.aplasticcentral.com/. As his website grew, it filled a tremendous void. Bruce’s talent and obsession made it possible to track his progress, communicate with other AA patients, and follow analysis of medical and non-medical methods for dealing with this mysterious and devastating disease.
It is incredible how he was able to keep up with it all and also cope with our mutual condition. Bruce utilized his computer knowledge to reach out and unite other AA patients suffering in obscurity. He searched for AA patients throughout the world via the Internet to share information and support for AA. His efforts resulted in Aplastic Anemia Central, the largest, most informed Internet site for AA patients to learn and network together. Through many thousands of hours of research, Bruce compiled anything and everything he could find pertaining to AA and has made it available, completely free, to anyone in need.
Bruce’s book, Aplastic Anemia and Autoimmune Diseases, is truly a public service to those of us searching for a quick guide to AA and other autoimmune diseases. In his (300+#) page, information-filled book, he discusses medical research, statistics, treatment options, and his own powerful personal experience. He delves into the physical aspects of AA and divulges his emotional defeats and triumphs.
In addition to cataloging the currently available medical research and treatments for AA, Bruce has included a section dedicated to various alternative methods of treatment. Treatments discussed include natural, non-toxic approaches to dealing with AA and other degenerative diseases. He has found natural treatment to be effective with his aplastic anemia. He explains and draws analogies to bodily functions to help readers understand.
Lastly, Aplastic Anemia and Autoimmune Diseases is a tribute to all the family, friends, and caretakers of AA sufferers. The experiences he shares regarding the care he was given is a reflection of the experiences of all of us who suffer from AA, both patients, and family and friends. We have family members, friends, and caretakers who also spent countless, emotionally filled hours helping us cope and survive our disease. You will feel his trying personal struggle, but you will also laugh with his great sense of humor.
If you or a loved one has suffered from AA, then I trust that Bruce shares experiences that reflect your own. His story gives a glimpse of not only the turmoil endured by the patients, but of the struggles endured by closest caretakers and supporters. Aplastic Anemia and Autoimmune Diseases is a must read for both AA patients and caretakers alike. It is a valuable addition to your arsenal of knowledge for your use in conquering aplastic anemia.
|Chapter 1 Triage A Visit to the ER
“Hello Bruce, my name is Dr. Jeff Kirshner and I will be taking care of you while you are in the hospital. We already know that you have a serious blood disorder – It may or may not be leukemia. If you want to hope for something, hope it is Leukemia because we know how to treat Leukemia today. It is not as serious a disease as it was in Brian Piccolo’s day.
Right now our job is to get you through the night and we will nail down the diagnosis tomorrow. You are in desperate need of blood and platelets and the Syracuse Blood Bank is out of your blood type. We are waiting for your transfusions to come from Rochester and there is a very real risk they may be closing the Thruway because of the blizzard. “
Say again! Was he talking to me? And what was this about not making it through the night? Having driven the New York State Thruway in a white out, I knew what it could be like. I was desperately looking around for some help. My wife Sue was looking at me with the same look she had on her face when our beloved Tasha died in her arms.
Melissa’s look was not much better. She was the youngest of our three daughters and my partner in our computer business. What was happening here? Hey, wait just a minute – being sick was not part of my plan. There was a business to run and somebody had to be in Albany tomorrow to finish an installation.
My mind was in overdrive – Why exactly would one wish for Leukemia of all things! Leukemia kills people. I had never been sick more than a day or two in my life. Surrounded by my wife and one of our three daughters in a cramped triage room at Community General Hospital, I began to worry about how they would cope with me gone. – For the first time in my life, my own mortality seemed very real; sure it would happen some day – but in my 80’s, not in my 50’s.
I didn’t know if I was in heaven or hell, but something was definitely not right! I am the picture of health! What was I doing here? Wow, this must be serious, Sue called Fred and Melanie and they arrived within 24 hours. “Hi Dad, how are you feeling?” asked Melissa, my partner in the web business. How was I feeling! Like I had been run over by a freight train and left for dead! What in the world just happened to me?
My Dad died at 54 and my mother at 63 so I had at least considered the possibility of a premature death. But Dad was a three pack a day smoker and I had recently endured a colonoscopy to head off the colon cancer that prematurely claimed my mother.
Dad had Hodgkin’s disease in his 30’s back before chemotherapy and he once told me how painful a Bone Marrow Biopsy was back then. My first biopsy to determine a proper diagnosis and prognosis was scheduled for the next day.
What happens after tonight? Will there even be a tomorrow? My life now depended on a courier delivering a life saving parcel from Rochester – normally only an hour away and it had already been over two hours. Strangely enough, there was very little fear of death. There was more concern over what would happen to Sue and our family.
* * * * *
This concern for others had not always been part of my personal agenda. Over thirty years ago on an equally snowy day in Central New York, Sue and I were married in a quaint little country church in Lafayette, NY.
We had only known each other since July of the same year, but she stole my heart from the very beginning. She declined two of my proposals before finally relenting. From that moment on, my life as a self-centered teen-ager came to an end.
A short time later, we were living “on the economy” in the Cold War divided city of Berlin, Germany. Our lives quickly changed from that of blissful newly-weds to young, frightened parents in a strange far-away land when Sue gave birth to the first of our three daughters. Until then, responsibility had been only a vague term to me. I suddenly found myself the breadwinner for our budding little family of three.
My thoughts were bouncing back and forth between previous life altering events and my present predicament so fast I could barely keep things straight in my own mind. I returned to that cold winter night in Berlin when our oldest daughter, Michelle was born. The Air Force offered virtually no support to married enlisted men back then. Buses and the subway were our only means of transportation, so a neighbor’s car became our maternity transport.
That was the first time I remember being in a hospital. Now, nearly thirty years to the day later, frantic calls were going out to Michelle and Melanie, our middle daughter. Melissa lives close by and was at her Mother’s side as the doctor delivered his frightening news.
My mind flashed to another frantic event in the Pediatric Emergency Unit of the Upstate Medical Center. Our middle daughter Melanie was strapped to a “papoose board”. She had been locked in this position for several hours and was in a full state of panic. Her boy friend, Adam was a year older and apparently had been taken to the regular Emergency Room. Melanie was crying because she was sure that Adam was dead. The last she had seen him, he was unconscious, bleeding from his head in his parent’s demolished car.
* * * * *
I returned to the present and wondered who would take care of our little family. They are all grown now and on their own, but once you become a father, your concerns never really go away. Melissa and Sue are heavily dependent on the website development business I had started after working for a major corporation the last ten years.
We had invested well over $100,000 of our savings to start the business and our net worth had plummeted with the drop in tech stocks and the recession-mired economy. Right now, however, we seemed to have a more pressing problem on our hands than whether or not the DOW would recover. My illness and the prospect of a premature death had now taken center stage in our lives.
* * * * *
The courier completed his life saving trip from Rochester to Syracuse in the middle of what was hailed the “Storm of the Century”. The New York State Thruway had been closed but the driver somehow managed to make the normally one hour drive in just under three hours in time to save my life.
He arrived at 2:15 AM on January 10, 2001 and the first of many life-saving transfusions was administered. He delivered one unit of platelets and two units of packed red blood cells. At the time of my admission, my platelet count was just under 3,000, white blood cell count was 1,500 and my hemoglobin was 9. The normal counts for an average sized adult male are 300,000 for platelets, 6,000 for white blood cells and 15 for hemoglobin.
I later learned that even a small cut could have resulted in my death since the platelets were so few in number. Such a small number of platelets would have been unable to stop any significant bleeding and I would have literally bled to death while waiting for help.
Platelets are the components in our blood responsible for clotting. Red blood cells deliver oxygen from the heart to the other organs of the body and return the carbon dioxide to our heart for recycling. A normal adult has ten pints of blood that circulate around the body in blood vessels that if fully stretched could circle the earth two and one half times.
The Bone Marrow produces between four and five billion Red Blood Cells or “Erythrocytes” per hour and they last an average of four months. The marrow produces White Blood Cells or “Lymphocytes” which fight infection, Platelets or “Thrombocytes” that aid in clotting and Plasma, which is the water and protein component of the blood.
In addition to the concerns of blood loss and platelets, I began to understand why my stamina had been so low for so long. It was a significant effort to walk up a small flight of stairs because my blood stream was unable to deliver the oxygen necessary to nourish my leg muscles.
About two weeks prior I had experienced a “fainting spell” in which my whole left side went numb. At the time, I was carrying boxes up and down a long flight of stairs in a dusty old warehouse in Batavia, NY. It was a struggle, as I had to stop and grab the wall for support about every seven steps. It was a major sign of something seriously amiss with my health that I should have acted on.
The building had forty-foot high ceilings and smelled as though it had been a cold storage warehouse in one of its previous lives. It was now home to ARAmatic Refreshment Services, one of our best customers. Fulfilling a promise to Art Darrow, the owner, I was determined to get this, the fourth of its four New York branches online before the end of the year.
Computers had been at the center of my life long before most of the world knew input from output. The first system I ever touched literally filled a room. It was an IBM 360 with the unbelievable capacity of 64 kilobytes of memory! We fed these funny little punch cards into a tray that gobbled them up, sometimes quite literally so that you always wanted to have an extra deck of JCL – Job Control Language – available as your back up.
The machine would then sputter and lights would flash and in an awesome display of power, it would re-calculate the amount of money 1000’s of bank customers owed the bank. A process that today could be done on my laptop in a matter of seconds took most of an eight-hour shift.
I began my “real” work life as a computer operator and then graduated to selling computers for a now defunct company called Digital Equipment. Computers like the one we sold for nearly one million dollars in the eighties are now available at your local Radio Shack for just under six hundred American dollars and they’ll probably throw in a web cam so you can have a live video conference with your grandchildren.
* * * * *
|Cover Jacket Notes
I didn’t know if I was in heaven or hell, but something was definitely not right! “I am the picture of health! What am I doing here?” Wow, this must be serious, Sue called Fred and Melanie and they arrived within 24 hours. “Hi Dad, how are you feeling?” asked Melissa our youngest, and a partner in the web business. How was I feeling! Like I had been run over by a freight train and left for dead! What in the world just happened to me?
The doctor took one look at me and said, “Something is seriously wrong, we don’t know what it is yet, look at your hand next to mine.” He rolled his palm up next to mine and I finally saw what everyone had been talking about. His palm was a healthy pink and mine was a grayish yellow.
“I nicknamed myself the Rabbit Man while being transfused with Rabbit Serum designed to suppress my immune system. This was supposed to allow my platelets and other vital blood cells the opportunity to grow normally. I had been diagnosed with Aplastic Anemia, a rare blood disorder that occurs when the bone marrow stops making enough healthy blood cells.”
“Our hematologist seems to think our daughter may have AA but has not diagnosed her yet. She has a bone marrow test on Friday morning. I have been reading up since he talked to us this morning to try and educate myself. Our doctor mentioned this is a worst-case scenario so I am a little interested as to what that means. He would not go into specifics with us today because he wants to see all the tests. Her hemoglobin was at 2.1 last night so they rushed her to PICU. It all has happened so fast. I am praying often and will continue researching. My daughter is 2 months old so the doctor is very confused as she is very young. I would like to get on a mailing list for news about this disease and also any advice or good questions to ask the doctors would be appreciated. Thanks.”