Cardiomyopathy / Polycythemia Vera
I spend a lot of time on this site patting myself on the back and taking credit for things that I could not have done without help. The truth is that there is one person alone who deserves the majority of the credit for my discoveries and my being alive today (once again, I am leaving my religious beliefs off this site). That is my wonderful, beautiful wife, Dawn. She has been an inspiration to me from the very first moment I laid eyes on her. She has stood by my side every step of the way through this journey. She has never faltered and she has never failed me. She has been my strength. Without her none of this would have been possible. Thank you Dawn. I love you with all of my thunderously beating heart.
My adult life leading up to November 5, 2000 had been a dream. I had a great career, I was making lots of money without a care in the world. I had just met Dawn, the woman of my dreams. My life could not have looked much brighter. But they say all good things must come to an end. Well my dream life came to a screeching halt when I was given some very bad news. After having a few dizzy spells and passing out a few times (no alcohol involved), I made an appointment with my PCP. I saw his nurse practitioner, as he was too busy to see me (thank goodness for nurses). I simply thought I was exercising too much and eating too little. But she did not like my symptoms. So she immediately made me an appointment with a cardiologist. I saw him that afternoon and he immediately tried to hospitalize me. It took some convincing and a few more dizzy spells but I was finally admitted to Orlando Regional Medical Center (ORMC) three days later. I believe I mentioned on the home page that I was stubborn.
After five days in the hospital, on November 5th, 2000 at the age of 37, I was diagnosed with a type of heart disease called Hypertrophic Cardio Myopathy (HCM). HCM reveals itself as an enlargement of the heart wall, specifically the left ventricle. I was told the disease was advanced and that it had developed into Dilated Cardiomyopathy (DCM). A MUGA scan showed my left ventricular ejection fraction (LVEF) as being 33%. I was further told that if the disease continued on its current path, that I would eventually need a heart transplant or I would survive no more than 18 months. I was told to relax, not do anything strenuous and calmly wait until I needed the transplant. I did not like it, but I did some research into the subject and could find no flaw in the doctor’s diagnosis or advice. So I did as I was told. I am not an MD after all, so who was I to argue with the cardiologists who have spent their entire careers treating diseases of the heart. So I went home, relaxed as best I could, and waited.
Unfortunately 3 months later I was further diagnosed with 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.
Now I have had many things happen to me in my life that I would normally attribute to blind luck. This is one of those things which could have been blind luck, or maybe it was divine intervention. During one of my standard blood work ups, the technician at Lab Corp through either an errant mark on the work sheet, or a simple misunderstanding inadvertently added tests to my panels for my hormone levels; Total testosterone and free testosterone. When I had my follow up visit with my hematologist he informed me of my results including the unusually low hormone panel. I was surprised to see that all my hormone levels were extremely low (the results of this initial hormone panel are shown in the Therapy section and Test Results section of this site). He did not seem surprised, nor did any of my other doctors when I told them about the results. They basically blew it off as being of no importance. But I had done my dissertation on neurotransmitters, specifically on serotonin and dopamine. So I knew a great deal about hormones and how they play a major role in the human body. So I decided to put some time and effort into researching any possible connection this might might have to my current health issues. It was a shot in the dark, and I knew I was grasping at straws. But this was my life and I was at least going to go down fighting. I was sure something could be done. I felt it in my soul.
So 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. I did find three different ongoing research studies that linked low testosterone levels in males to heart disease, but nothing that had been published or even acknowledged yet. I brought this research to my cardiologist. I told him that I thought if I could start taking a low dose (150mg every 10 days) of injectable testosterone along with an anti neoplastic agent (Testolactone), and an ace inhibitor (Enalapril) that I thought this might work to help strengthen my heart. I further wanted off the digitalis (Digoxin), and the beta-blocker (Atenolol) that I was being prescribed as I believed most of my side effects were coming from those two meds and my lack of exercise. He told me “No” in no uncertain terms. I then asked him if he would order a new set of blood work to include not only testosterone levels but also my insulinlike growth factor (IGF-1) and my estradiol levels. He told me I was crazy, out of mind, that there was no medical precedent for it. He said that this was the absolute worst idea that he had ever heard of. He stated that this was the worst thing I could possibly do to my body.
Now at the time that I was diagnosed, there had been no real advancement in the treatment of HCM, DCM, 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.