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Liver transplant - Let's support each other

Transplants | Last Active: 2 days ago | Replies (1623)

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@contentandwell

@stella25 I am really not familiar with PSC and why that makes it more important to have a living donor so he can be transplanted sooner. My problems were caused by NASH cirrhosis. What are the unique risks that PSC patients have?
I hope you do find a donor for him. I have seen where people have even found them by posting on Facebook. I always marvel at what generous spirits those people must have, to go through that for a complete stranger. My son and daughter both volunteered but that was for me, their mother, so a completely different situation.
JK

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Replies to "@stella25 I am really not familiar with PSC and why that makes it more important to..."

@contentandwell PSC is a progressive rare autoimmune disease of the bile ducts where the ducts become inflamed & scarred & are eventually narrowed & blocked preventing bile from flowing properly. The bile builds up in the liver which leads to damage and/or cirrhosis (my son is stage 4). There is no known cause & currently no proven treatments to change its course or slow its progression. In addition to the jaundice, extreme itching, fatigue, irregular sleep patterns, risk of HE, vitamin deficiency & weight loss, PSC patients also experience deterioration of muscle mass, bone loss, IBD, cholangitis, esophageal varices, ascites, increased risk of developing cholangiocarcinoma & cancer of the colon to name a few. We know of PSC patients who are far worse off than my son & have a MELD of only 6 or 7. My son is on a myriad of medications to manage his symptoms. He also undergoes ERCP every couple of months to sweep out his bile ducts, replace a stent & check for cancer. Both my husband & I would love to be his living donor but unfortunately we are past the cut off age. Yes, we are using various social media outlets to find a donor. I am in awe of these people that we don't even know who have offered to be my son's donor. We are truly humbled by the courageousness & generosity of all those who offer. It is a pretty rigorous screening for donors once they get past the health history questionnaire. God bless them all:-) I am not familiar with NASH. I will need to read up on it so I better understand. Have you been transplanted or still waiting? My best to you.