|My name is Jenna Small and I am living proof that organ donation saves lives.
I was born with a disease called congenital neurotic syndrome which essentially caused my kidneys to never develop in utero. I was diagnosed at 5 days old and put on peritoneal dialysis which had never been done on a child before in Louisville. My parents were told I was in desperate need of a kidney transplant and that it could not be done until I was 15.I was 10 days shy of my 3rd birthday when I received my kidney from my dad at the University of Minnesota. After surgery, I met all my milestone including creeping crawling walking and talking (Which I haven’t stopped since). Dr’s told us it would last 3-5 years and it lasted over 20. So much for statistics.
When my kidney started to fail again at 24 my mom stepped forward to be my donor. It was exceptionally rare for both of my parents to be a good match. Everything went well. I proceeded to get married in September of that year and all was well.
Two years later I became ill and was diagnosed with a very rare form of rejection which can occur in one in every 1.5 or so million transplants. Which is also essentially extremely difficult to catch before it occurs. According to Doctors, there was nothing anyone could have done to prevent it. I immediately started dialysis and stayed on dialysis until 2016. When I was evaluated for transplant I was told due to the 2 previous transplants any blood relation to me could not be tested as a donor because I had built up antibodies to all of them.
We started our search and 30+ potential donors later we still had no living donor matches. This is extremely rare and I am an extremely special case. It is rare for anyone to have the issues I’ve had. After 3ish years on dialysis, I received a call from UK that they had a potential deceased donor match for me. I went to the hospital and waited. It was the longest wait ever! This wait was made even more difficult by the fact my room was next to the helipad so I heard and saw every helicopter. Not so fun when you’re waiting on one to bring a kidney.
After 2 days in the hospital, Dr’s came in and told me I would be getting the kidney that morning. My last dialysis treatment was on July 17 2016. I was taken down for surgery and everything went well. Today I have celebrated 3 years post-transplant and am doing well. My kidney function and numbers are normal and Dr’s have been shocked by the success and see no end in sight.