Sesshy Heart and Double Lung Transplant

Postby sesshy » Tue Oct 23, 2012 3:53 am

Hi, I needed a heart and double lung transplant when I was born. I got my transplant May 9th, 2000. I was 11 years old. The transplant wasn't easy I got Graft vs host disease. The doctors didnt know what to do it is rare to get graft vs host disease in a solid organ transplant. They gave me amphotericin to try to get rid of it. I had a fever that they couldnt explain and was double door isolated for 73 days. My mom still has the calendar we marked the days on, but eventually I did get out of the hospital. I went to a place called the hometel because I dont live close to the hospital. Even then I was throwing up every time I would eat. It wasn't long after the transplant that I was diagnosed with PTLD. PTLD is a form of cancer it was in my new lungs. I went through 2 rounds of Rituximab after my second round they decided to do a Thoracotomy. They did a cat scan the day before. They're were nodules but when they went in they couldn't find them. So I was and still am in remission. Now its been 12 years since my transplant and even though it didnt start out good. I can say that for me it was worth it, and I'm doing good now. 
This is just a very short part of what happen but I just thought I would share.
before my transplant I had; 3 heart surgeries, 1 brain sugery, and 4 strokes