Posted 11/18/2013 3:34 AM (GMT -6)
I'm 34 years old. After a year of suffering from severe breathing issues and debilitating bronchitis-like illness every 4-6 weeks, and several months of doctors passing me around to different specialists, I have been diagnosed with noncompaction cardiomyopathy. Apparently, it's a rare, incurable and degenerative form of cardiomyopathy that was discovered in 1984, and, as a result, there's limited research on the subject. My ejection fraction is 35%. I live in NYC and I'm being treated by the head of cardio at one of the best hospitals in the world. I have asked my doctor tons of questions about this condition, but, shockingly, he doesn't have any definitive answers and is clearly noncommittal in his responses. I have never heard a doctor say "I don't know" so many times in my life, especially one with such glowing credentials. Based on the limited research available, it appears that I will almost certainly die or need a transplant within the next 5-15 years. However, in order to qualify for the transplant list I have to be in considerably worse condition, and once I get on the list I have to be stable and live long enough to actually receive a transplant. Not to mention, that my body has to accept the new heart once and if I get one. This is more than overwhelming. The obstacles are seemingly insurmountable. I have been told to go on a very restrictive diet, eliminate alcohol, caffeine, and any toxins from my lifestyle, and I'm on a small dosage of diovan, but I feel like this course of treatment is like shooting a bullet at a freight train. I am astounded that, considering that heart failure is one of the top killers in the world, there have been such minimal advancements with the treatment of all forms of cardiomyopathy, which Is a major cause of heart failure. I think we need a platform like the breast cancer folks. We need a month where all professional athletes wear red or a broken heart patch, or a bracelet, or something to raise awareness and, more importantly, money for research!!! It's almost comical that illnesses these days are fought with good marketing and branding. Does anyone have any information about my condition? Advice? Recommendations? Know of any clinical trials or experimental treatments? Want to donate a heart or a billion dollars?