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Liver transplant - Let's support each other

Transplants | Last Active: Jun 22 9:17am | Replies (1606)

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@contentandwell

@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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Replies to "@stella25 Thank you for the explanation. I am surprised that you are beyond the age limits,..."

@contentandwell yes my ERCPs were/are have all been post transplant. I had no bile duct issues prior to surgery. I don't know if it was caused when reattaching the ducts to the new liver? As for fluid build up I never had fluid build up either. Only my feet and ankles swoll up. I was put on diuretics for that and the swelling went down significantly. I also requested more than 30 days supply of tacrolimus but was told only 1 month could be dispensed (I live in Ontario Canada 🇨🇦) at a time. I have to take Prograf only though. They didn't want me on a generic brand. They did end up giving me 100 pills instead of the 60 though.