HeavySpaceTank3 karma2019-02-06 18:48:20 UTC
So far most of my issues have been from the UC (a few hospital visits because of inflammation etc. but nothing life threatening), I've only been told that I "might eventually need a transplant" rather casually and I've been given Ursofalk for my PSC. I have heard that there's some minimally invasive procedures that can open up your bile ducts, or that you can take bile supplements to improve digestion. I don't digest food that well because it's absolutely impossible to gain weight, and I'm sure the ulcers in the digestive tract don't help either. Obviously those are for people who have a slower-acting version of PSC, they won't do any good if your liver destroys itself within a year. Stem cell research is definitely the future, and if I ever need to get a new liver, I hope it's a copy of mine (minus the PSC, hopefully). For the time being my biggest worry is how long until I start having liver issues, which I guess is a first world problem among PSC sufferers.
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HeavySpaceTank3 karma2019-02-06 18:05:03 UTC
Hey, I have your exact combination of diseases, although clearly much less severe since I'm 25 and my liver still works...sort of. From your experience, is it an inevitable procedure for PSC patients? Do you still have liver issues after the transplantation, or are the meds only for the UC? (I recognise a lot of the names, I tried most of these myself but thankfully I'm off the cortisone and azp). And if I get a liver donation from a relative, do I still need to take anti rejection drugs? Thanks and I wish you the best of luck in your health struggles.
HeavySpaceTank2 karma2019-02-06 19:21:24 UTC
Yeah, I guess you're right. The one thing that I can do that makes a difference (apart from following professional advice) is eating properly and exercising. Some substances like sugar and alcohol are very irritating, both for the liver and the intestines, and I'm sure that cutting them out can only be good. I've developed a very keen interest in this kind of stuff after learning about my diseases, and maybe I will take it further and study to become a nutritionist.
Thank you very much for the chat, you are truly a very compassionate person to be able to empathize with people who are "luckier" than you. I hope medical technology and of course healthcare systems both improve drastically within the next few decades, I remain cautiously optimistic about the former, not sure about the latter...
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