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In boyhood I started with a rare kidney disease that is autoimmune mediated. I’d have been more than happy to just stick with that one, but I added “probable” ulcerative colitis and atopic dermatitis in recent years, possibly provoked by a med used to treat the kidney disease. The fun thing about autoimmune disease is never knowing what sets it off. Docs don’t know, you don’t know, literally nobody knows. You go through life with a sword of damocles.

That sarcoidosis sounds miserable.

The Sarcoidosis has landed me in the hospital at least once. It attacked my lungs in 2007 and I needed steroids in an IV, and I don’t remember what else. I think I would rather undergo another transplant than go thru that again. This all started when I was 40. Right now I have skin problems, too, sarcoidosis lesions on my legs. I have to use an ointment on them every day.

My GI doc told me I had Primary Sclerosing Cholangitis-PSC- which was closing off my bile ducts, and scar tissue inside my liver. It was hard to tell which one did the most damage, the PSC or the sarcoid. They both contributed to give me cirrhosis.

I still have some issues, but mostly age related-I’m 71 and I have my own little pharmacy at home, lol. Anyway, I’m here and I thank God every day FOR every day, and I truly am grateful to my doctors and the transplant community for what they’ve done and continue to do for me.

I used to think like some people on this forum, “I’m going out of this world with everything I came into it with”, but the truth is we don’t know what might be just around the corner.

Life isn’t fair. I have a brother in law who is in assisted living because he has Parkinson’s. My other brother in law is a couple years younger than me, he has had mental issues all of his life which have pretty much alienated him from just about everyone in the family, he’s divorced, smokes like a chimney, drinks like a fish, and he’s still here. And he has a son in his 30s who is carrying on in Dear Old Dad’s footsteps.

I didn’t drink nearly as mush as he did, and I’m the one who had a wrecked liver. Go figure. I have much to be thankful for.

One last thing- the only thing I know about my donor is that he was a juvenile. Imagine that. The kid, for whatever reason, didn’t get to live life, it ended abruptly for him. And I’m still chugging along.

Life ain’t fair, but that’s just the way it is.

I’m sorry-I started rambling on- I wish you the best with your health- you have been dealing with your health issues since childhood. I can’t imagine how terrible that must’ve been for you. Childhood can be rough enough if you’re healthy sometimes. Hang in there.