I was born with a congenital heart defect. Four problems, in fact. Tetrology of Fallot is the official name for my disease. My mom and dad were warriors, navigating the system here in New York and finding me incredible care. I had a successful ‘complete fix’ when I was 3.5 years old. Now that I have two girls of my own (11 & 14), I can appreciate how incredibly difficult those first handful of years were for my parents. Having your baby sick for years and no guaranteed fix must be debilitating. They persevered and I was a lucky one. I had a successful surgery and proceeded to live a perfectly normal life as a boy. Only once did I use my heart as an excuse and that was to bow out of lacrosse in middle school & that was just because I hated wearing all the gear.
As an adult I enjoyed making tons of music, falling in love, becoming a parent, and starting a business. I consider my life blessed in so many ways.
This past Fall I discovered that there is indeed no such thing as a ‘complete fix.’ At the time, my surgeon, Dr. Baum, believed the problem solved. Now doctors know better. More and more adults in midlife are coming forward showing symptoms of heart disease; shortness of breath, fainting, for me it was palpitations. My heart would race for just a moment and then just as quickly settle back to a normal rate.
My whole life I have been highly active and doctors have always told me I was in great shape, until now. It turns out that my Pulmonary Valve (that’s the one that guides the blood up your lungs to get some oxygen) had been on a steady decline for many, many years. It’s working at 50% or less right now. And the result is that my right ventricle keeps getting flooded with de-oxygenated blood. My pulmonary valve is trying to do it’s job but keeps failing to close properly. And voila, a bunch of the blood flows back into my heart, never reaching the lungs. And if you are a right ventricle, that makes your job incredibly tough. You start to get extremely bloated. My right ventricle is about three times the size of a normal heart.
The bottom line is that even though my symptoms are quite minor right now. I actually feel great and continue to exercise, make music, do all the things I love to do. The reality is is that my right ventricle could fail at any time and eventually will if I do nothing.
The fix is getting a new pulmonary valve (my girls and I have called it the ‘super valve.’) See the video below…we do a brief song about it at the 3 minute mark. So, I will be getting a brand spanking new mechanical valve. Swapping out the old for the new. The benefits are twofold: 1-I am now going to be getting 100% of oxygenated blood to my body. That hasn’t happened in a long, long time. I may be able to all of a sudden run a marathon…maybe. 2-My right ventricle will be psyched to longer have all this unwanted blood flowing back into it. It will pump blood towards the lungs and not see it again until it comes back around. My right ventricle should shrink in size significantly.
Yes, I thought I was fine for the rest of my life. My mom always said, ‘I was just like every other boy.’ The reality is I’m not fine. But modern medicine has come a long way since 1972 & I am extremely confident in my surgeon and cardiologist. I will recover for 2 months and be back better than ever.
See you at the gig.
Founder & Director
Brooklyn Music Factory
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