Three months after being diagnosed with Hypertrophic Cardio Myopathy (see Case History for details) on November 5th, 2000 at the age of 37, I was further diagnosed a type of blood disease called polycythemia vera (PV).
Polycythemia vera presents as an abnormal increase in blood cells (primarily red blood cells) due to excess production of the cells by the bone marrow, and is classified as a myeloproliferative disease. This was something that neither my doctors nor I had counted on. Polycythemia Vera causes the blood to become very thick. Therefore the heart has a much harder time pumping it. There is no cure for polycythemia vera and phlebotomies are really the only treatment to combat the thickening of the blood. At this point I add a hematologist to my growing repertoire of physicians. He orders standard blood work ups to keep track of my hematocrit levels and I begin going to the Central Florida Blood Bank for phlebotomies.
For HCM patients, there is the treatment option to be added to the heart transplant registry in hopes of a last resort procedure, however, with the added diagnosis of PV, this was no longer an option. It was not likely a heart transplant patient would survive with a blood cancer as a complication.
After continued therapy, I began talking to doctors from California to New Jersey. I pounded the virtual pavement of the Internet. I did research on every obscure type of therapy being used on patients who had cardio myopathy or polycythemia vera. After three months of research I came to the conclusion that there was no readily available therapy that could help me.
Now at the time that I was diagnosed, there had been no real advancement in the treatment of HCM, DCM (Dilated cardiomyopathy), or PV for decades. So the recommendations the doctors gave had not changed much either.
The first thing that my doctors told me was that I should be completely sedentary. No strenuous activities what so ever. My cardiologist informed me that this school of thought was over 40 years old and not guaranteed to really benefit me in any way. But he said they knew it could not hurt. The base argument for not exercising after being diagnosed with HCM makes sense on a certain level. Exercise causes muscle growth. The heart is a muscle. If you do not do any exercise, the heart may not get any larger. In fact if you do no physical activity at all your left ventricle (the part of the heart that does the bulk of the work) might actually decrease in size due in large part to atrophy. Therefore you might live longer. But there were also negative side effects to doing no exercise. A sedentary lifestyle in my opinion was as bad or worse for my heart and my health than a moderate amount of exercise. I was gaining weight, my blood pressure was rising, and I was depressed because it seemed all I was doing was waiting around for my heart to give out. My libido was in the gutter and my cholesterol was skyrocketing. Basically I was miserable. Plus the meds the doctors had me on made me feel like a zombie. I felt much better before I started taking all their “life saving” drugs and stopped working out. Something new was called for, something that had never been tried before. I had less than a year to live according to my doctors so some radical ideas were needed.
I moved forward with a vengeance. I believed that most if not all my problems were caused by my endocrine system being out of whack. I already knew that most of my hormone levels were extremely low. What I needed was to get them to normal levels. I believed that balancing my hormone levels along with a regular cardiovascular and light weight-training regime could cure my problems. That is what I was hinging all my hopes and sanity on anyway. For the next several months I spent more tireless hours and more sleepless nights than I care to remember researching heart disease and blood disease. I spent all my time and a great deal of money on research and travel to meet with physicians and scientists from across the country. I argued until I was blue in the face with doctors and scientists who refused to even here me out. I had developed what I believed was a revolutionary therapy. I knew it would work. Yet no one else could see it. In fact it got me laughed out of, or thrown out of every doctor’s office I took it to. I had no proof that it would work. For that matter I had no proof that it wouldn’t make matters worse. But I did not have time to follow standard procedures, to use scientific method to form a testable hypothesis, to use observation to test the long-term effects as I was being told to do.
I needed a doctor who was open minded enough to listen to my ideas, who would take a serious look at my research, and start me on a drug therapy put together by someone with no medical degree. He would have to not only prescribe me the drugs. He would also need to monitor my progress, order my blood tests, review my results, and deal with my other doctors who were critically opposed to my therapy. And most importantly he would need to believe in what we were doing or he would never be able to see it through. I would after all probably get worse before I got better. But this therapy used no new experimental drugs. They were all FDA approved drugs simply being used in an unconventional combination and method. What could the harm be in trying it? After all, I was the only person who would be at risk if something were to go wrong. And I was dying anyway.
Oddly enough I did find many doctors who were willing to prescribe me testosterone and human growth hormone. They call themselves Longevity Specialists. It is all the rage with movie stars, models, and aging baby boomers desperately clinging to their youth. These doctors are willing to throw prescriptions at you if you have the money and the “need”. But when I would explain my situation to these Longevity Specialists they all back-peddled. They told me they had sworn “to do no harm”. Hippocrates would roll over in his grave if he could see these "healers". They would prescribe armloads of hormones to people who wanted tighter skin and perkier asses. But they were afraid of doing it when someone’s life was at stake. Then came the final blow. My doctors told me that when the time came they would not be able to add my name to the heart recipient transplant list. The transplant organizations have a very strict set of rules as to what qualifies or disqualifies a person for an organ. The polycythemia vera was causing my blood to thicken and therefore would make it too difficult on the donor heart to adapt and function properly. Thus greatly increasing the risk of rejection. The doctors said they were sorry, but there was nothing else medically that could be done. I was told to go home, get my affairs in order and wait to die.
As you might guess, getting this news was like being kicked in the stomach by a mule. So I am a few months from death's door. I have approached every doctor I can think of all to no avail. Nobody will work with me on my therapy. Most of the doctors I talk to simply do not think it will work, or they think it will kill me. Others are afraid their reputations will be sullied if they get involved. Doctors have big ego’s, they do not like to be laughed at. I try to remind them that I have only a few months left and they could not possibly do me any harm. But most physicians do not like to take risks when it comes to unproven methods. The general response I got from them was that they did not know the long-term effects of these drugs, so they could not prescribe them to me. Well, when you are 37 years old and you have only a few months to live, the term “long-term effects” means exactly nothing to you.
I had exhausted all my legitimate avenues. But I was still not prepared to give up. I still had the option of going to a Longevity Specialist and lying about my health to get the drugs I needed. Although that was a long shot due to the fact that anyone who met me face to face could see that I was obviously not well. I also knew I could buy the drugs I needed from Canada or China. It would be much more difficult to monitor my progress without a physician overseeing me but I was out of options. I would have to monitor my own progress. My hematologist was still adding hormone profiles to my blood panels as a favor to me. I would simply have to hope that when he caught on to what I was doing he would not go ballistic. My time was running out. My decision was made for me. I had no choice but to order the drugs from China. They were simple to get and the manufacturer even guaranteed the drugs would make it through customs or they would replace them. I knew this was illegal but what choice did I have. It was now or never, literally. I was doing it. However things do not always work out as we plan.
The day before I was to order my drugs from China I had a transient ischemic attack (TIA), most likely caused by my PV, that placed me in the hospital yet again. One step forward and two steps back. It seemed this was the beginning of the end.
But it actually ended up working to my benefit. It was a lucky break for me first of all because the TIA was minor and I suffered no long-term effects. But it was also during this stay in the hospital that I met the doctor who would believe in my research. I am going to call him Dr. X, as he does not want to be inundated by phone calls since our therapy is not approved for use on a large number of patients.
Amazingly he was the neurologist who saw me in the hospital after my TIA. He was not even supposed to be on duty that night. He was called in on his off day. At first of course I did not even realize how lucky this was. I was just another patient and he was simply the Neurologist on duty. But he had left me his card, and when I looked at it, I realized that he was not only a neurologist but he was also an endocrinologist. He was exactly the doctor I needed to help me. I was elated; bells, and whistles of possibility went off in my head.