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Liver transplant - Let's support each other
Transplants | Last Active: 3 days ago | Replies (1617)Comment receiving replies
Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.
Replies to "Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago...."
Stella, It also took between 1 - 2 years for me to have a PSC diagnosis. I was just over 50 then.
I was 60 when I received my transplant from an anonymous deceased donor. And the time in between was a mix of ups and downs. I was also told by my GI when it was time to go to the liver transplant team for evaluation, and I was both comforted and frightened by that.
I know that we are a rare group, and that is how I found Mayo Connect. I wanted to meet someone else who had a transplant due to PSC.
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@stella25 most of us who have had cirrhosis and liver transplants have had other causes, but we too can help if you have questions not directly related to PSC, Rosemary knows so much about all of that, and is the expert on PSC. She was fortunate in not having HE episodes, whereas I did have them.
When I was finally diagnosed with cirrhosis after almost a year and a half of not knowing what my problem was, I went to a hepatologist. She said I probably had cirrhosis for 10 years, cirrhosis takes a long time before presenting itself. I had some vague symptoms that were not attributed to cirrhosis at all. So, it’s not unusual that your son had it for a long time also. I then realized that my shaky hands and diabetes started just around the time that the hepatologist indicated.
I had my transplant in September 2016 and have been doing well ever since. I hope your son becomes a candidate soon and doesn’t have to wait too long for a transplant.
JK