Why the new heart – you look fine!

I’m guessing a few people are probably wondering why I need a heart, I look just as healthy as everyone else. I usually don’t talk about my condition but I guess a little background information is in order.

I have a congenital heart defect, which means I was born with a malformed heart. I had a very large hole, a bad mitral valve and an abnormally shaped ventricle (the main pumping chamber of the heart). Usually these are discovered in childhood but due to the fact that I grew up in the far reaches of Canada, it was not discovered until I was 19 at which time I was informed I needed open heart surgery to repair it all. What a way to ruin a teen-agers life! I had the surgery but it was a failure and I had to have a repeat open heart surgery 6 months later. At the point I had a few patches in my heart and an artificial valve.

Those experiences led me to try and learn more about my condition and ultimately a career in Cardiology. I tried to live as normal a life as possible, working in Saudi Arabia and meeting Leonard there. While there I developed more problems and discovered that I would need a 3rd surgery to replace my mitral valve again and fix a few more holes that were discovered. I was recommended to go to the Mayo Clinic in Rochester, MN where they had recently developed a Adult Congenital Heart Program. This was a new field that became necessary when all the children who were born with heart defects started surviving into adulthood because of advances in medicine. Prior to the Adult Congenital Heart Program all us surviving adults were being followed by Pediatric Cardiologists. Now there was a whole new speciality devoted just to Adults with Congenital Heart Defects.

I had my 3rd surgery done at Mayo in Rochester, MN and it was a pretty big one. Multiple patches and a another bright shiny new mitral valve. At that point I developed bad rhythm problems from all the scar tissue in my heart and they have plagued me ever since. I still continued to work in Cardiology where my focus unsurprisingly became heart rhythm disorders. Another 20 years passed, I worked full time but battled continuing rhythm problems, eventually having a procedure done to burn all the bad rhythm areas in my heart. That didn’t work and I ended up with a pacemaker and still had rhythm problems. Very frustrating.

I continued to be seen at Mayo Clinic every year and during a routine follow-up I was told that I needed to have not one but 2 of my valves replaced. Another big surgery which did not turn out as expected. By then I had too much scar tissue in my heart and those replacements were not able to be done. Only some repairs were done with the hope that it would be okay. Not all was okay, 5 years later I needed yet another surgery to try and repair the sutures that were coming undone and holding my mitral valve in place. At that time I was told that I couldn’t have any more surgeries and would need a heart transplant next.

I began to follow-up with the Advanced Heart Failure/Transplant team in Jacksonville 5 years ago. Many different drugs have been tried to relieve the high pressures that developed in my heart and lungs as a result of all the scar tissue. Unfortunately none of them have worked and in April of this year I was told I couldn’t wait any longer. An extensive evaluation followed where they check out every part of your body to make sure you are healthy enough for a transplant and I was officially “listed” on the transplant list at the beginning of July. Then the transplant team decided to admit me to the hospital and move me up on the transplant status list where I will wait until the correct donor becomes available.

Congenital heart patients are amazing people. One of my congenital Dr’s explained to me that we are often misdiagnosed because our bodies learn to adapt over so many years and can tolerate conditions that others would find completely disabling. Another Dr. said I was a ticking time bomb. Not exactly the thing I wanted to hear. So although I may ‘look fine’, just remember that only 10% of our bodies are on the outside, 90% is inside. I hope that clears up some of the confusion people have when they see me!! LOL