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Liver transplant - Let's support each other
Transplants | Last Active: 2 days ago | Replies (1617)Comment receiving replies
@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.
Replies to "@contentandwell PSC is a progressive rare autoimmune disease of the bile ducts where the ducts become..."
@stella25 Thank you for the explanation. I am surprised that you are beyond the age limits, I think many transplant centers look more at overall health than chronological age. Have you tried any different transplant centers to see if they have the same age restriction? I am sure it must be heartbreaking to not be able to help.
NASH is Nonalcoholic fatty liver disease. Most people who have NASH are overweight, I was. It starts out as fatty liver and if nothing is done it progresses to NASH cirrhosis. I had my transplant in September 2016. When I look back on my pre-transplant days it seems like a bad dream. I thank God for my donor (deceased) and that she, despite being young, had the forethought to be an organ donor. I think many young people just figure that won't die for a very long time so there is no need to address that now.
@gaylea1 After transplant you still have to have ERCPs? I never had to have that, not did I have to have the procedure to remove fluid, although I was at the point where that was about to be necessary. I recall looking at my feet one night, they were up on an ottoman, and there was fluid leaking out of the pores on my feet. They were so swollen that there was nowhere else for the fluid to go. It was very disheartening, but thankfully my transplant happened within the next week.
@jerrynord @rosemarya I had hoped to get a multi-month supply of my immunosuppressant but the pharmacy told me that it's up to the insurer. Medicare will not allow multi-months on the immunosuppressants for some reason, perhaps because they are costly.
JK
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@stella25 I had a complete liver transplant (non-living donor) a year or so ago. My MELD score was over 30 at time of transplant. As a result I have blocked bile ducts and also undergo ERCPs. None of them have been what could be described as even tolerable. Three failed miserably but I now have only one stented bile duct. I was supposed to have it evaluated March 16th but the ERCP was cancelled. Has your son ever experienced Pancreatitis due to an ERCP? I'm asking because every time I have one I get this debilitating outcome. I end up in hospital anywhere from 7-10 days immediately following an ERCP. The pain is worse than any labour pains and lasts a long time. I am on morphine, demerol, gabapentin and tramadol to help relieve the pain. Eating any solid or semi solid increases the pain so I have clear fluids only during this time. Recovery takes months as eating becomes an issue. I am wondering how many other people go through this with ERCPs? I've heard it is common and to be expected but I've only found one other person who goes through this as well on this site.