It is 3 years and 4 months since my living donor liver transplant at Northwestern Memorial Hospital in Chicago. My hepatologist calls my liver a "superstar," because of the blood test results I get each month. My PSC diagnosis goes back to 2000. I have had UC my whole life. Most of the time it is in remission. When they diagnosed PSC, the doctor told me PSC had caused the UC.
I had End-stage IV liver cirrhosis in 2007 and began having liver failure episodes starting in 2009. I was on two cadaver transplant lists, one in Milwaukee and the other at Univ. of Wisconsin in Madison. After waiting on the lists for an organ for 3.5 years, the transplant surgeon at UW told me PSC does not score accurately on the Model for End-stage Liver Disease, which is what they use to allocate cadaver livers. He said my liver was in very bad shape, that I would not live long enough to qualify for a cadaver and that I needed to find a living donor.
My family is small and only two relatives were the same blood type, the first qualification before being evaluated at greater length. My daughter was tested, but did not match anatomically. My nephew lived in the Middle East with three little children and was disqualified. My daughter posted my story on Facebook. A childhood girlfriend contacted her and volunteered to be tested. She was a perfect match.
The surgeries took place two weeks later. They were done by two different surgical teams. They opened me first to make sure there were no hidden complications such as cancer. They coordinate the removal of my entire liver with removing 2/3rds of my donor's liver. A live donor transplant takes longer than a cadaver transplant, generally speaking. This is because they have to hook up a mid-point on the donor liver with the core where my old liver was attached.
As soon as I regained consciousness, I wanted to know how my donor was. Her husband wheeled her into my room. Seeing her smile and holding her hand assured me she was going to be fine. Her recovery took about a month. Within two months, her liver had grown back to normal size. The piece I received grew back in 6 months. My full recovery took 12 months.
My surgeon said a liver transplant is the most complicated surgery there is. I failed to mention that I went to Chicago's Northwestern Memorial Hospital for the living donor transplant because they had the most experience doing them.
Unlike many PSCer's, I absolutely needed a transplant to live. I was one who could not be managed the rest of my life. Some are, but I was not. My new liver functions perfectly. I take 1mg of Prograf 2 times a day for rejection and a prescription antacid called Pantoprazole just once a day. That's all the post surgery medicine I have to take. I can't begin to tell you how grateful I am.
Is a post-transplant thread going to be opened up? I think it would be good to have transplant stories in one spot so PSCer's facing that situation or just wanting to know more about it could draw on our experiences. Believe me, there is a lot more detail about the transplant experience than what I have generalized about in this post. I would be very happy to answer questions about it or share more on the transplant topic. Gosh! There is soooo much someone learns ramping up to the transplant, such as medical tests to qualify for the list and your own fitness for such a challenging surgery.
I do not want to scare anybody away from the surgery. You get through it. You just take one step at a time. I had great transplant team care, and they are just as available and caring today as they were back then. If it is right for your, don't hesitate.