“You don’t look sick to have a transplant!” That is the quote I got at the very beginning when I switched from Pittsburgh Children’s Hospital to Indiana University Health for my adult side transplant team. I looked at him smiling saying I have maple syrup urine disease and he understood immediately. Even though I smiled, it astonished me and still does that even a healthy look individual can look healthy but still have health problems.
My transplant story actually started back in 2005 when I was in the Riley Children’s Hospital for an overnight stay for elevated levels. I remember my doctor, Doctor Rebekah Wappner, coming into the room and looking over me. She turned to my parents to asked if they thought about a liver transplant for me. To their shock, they didn’t think to ever hear that coming from her mouth. But after seeing me or the past 6 months, they knew that I deserved a better life than eating low protein food and being in the hospital. In the prior years before this, I was convinced that the transplant was the cure to this disease. But my parents felt differently. They would always say “there are many more people that are in need of a liver than you are.”
After careful consideration, my parents and I started this journey that would change my life forever. My mom being the planner she is arranged with the doctors at the Children’s Hospital of Pittsburgh, where the protocol is for an evaluation of me to get on the transplant list. We would be traveling to Pittsburgh during Fall Break from school and meet with a lot of doctors and get lots of blood work done. I can’t even believe how much talking I had to do. From the transplant team themselves to the psychologist on where I was and how I thought, it sure was tiring. After all the talking with doctors, we received my score/placement of where I was on the transplant list from the transplant coordinator, Lynn.
After the evaluation and called from my transplant coordinator the waiting began. The anticipation that at anytime a call would come saying they had a liver for me was dreaded. I wore a pager to school just in case the call came through. I had hoped that it would just for the dramatic affect it would have made if it had. But the first call came at 11p on the l first week of January right after the new year but sadly it was not for me. The second call came in about 2:30-3a on February 1st 2006. I remember that night very well. I will go into more detail in my next post on that special night and everything I remember about getting my new liver.
Love and cheers,