STK-AizenSousuke56 karma2018-12-24 19:57:24 UTC
Welcome to the club man. Sucks you had to get it so young. I got mine two years ago at 32, Primary Sclerosing Cholangitis almost killed me. Fight hard, it will only go up from here. No itch, so much more energy, yellow is gone, bloating and infections gone, foggy mind gone.
My question to you is, what do you plan on doing with this new lease on life?
Also, If I may offer some advice when you get out:
Wear sunscreen. We already have a higher chance of getting cancer due to the meds (I'm on myfortic and cyclo modded) and skin cancer can kill fast.
Keep up to date on your meds. I see you ended up with a rejection episode, apologies that happened, but use that as a reminder that this shit is no joke. Always keep stocked and never skip a dose.
Keep in shape. Fatty liver is not something you want as a transplant recipient. Not being in shape is only going to hurt you worse in the long run. Don't fuck around with your overall health.
Don't think about the negatives. You are alive right now. You have no idea what's going to take you, so just take care of yourself and don't let stress mess you up.
Most important: live your life to the best you can. We are having this conversation because heros have donated to save our lives. Yours is still alive, mine isnt. This gift should never be brought down in importance. Be happy. Each day is a gift. Make your donor proud and make sure you live to deserve this gift, because there are many, many more who are waiting for it and who never see it. We are astronomically lucky, always remember that.
If you have any questions at all about life after transplant, feel free to hit me up. Whatever I can do to help.
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STK-AizenSousuke5 karma2019-02-06 19:03:36 UTC
Seems like we're coming out of the woodwork here. PSC/UC 2001, transplanted 2016. I'm sorry you guys are feeling this way. It's not easy, and I can honestly say I understand what you are going through (at least medical wise). I know it's frustrating. Two years before I was transplanted the itch was unbearable. I was under so much medication that just made me stupid, but never stopped the itch. At that point I was starting to give up. I was very lucky to have such a strong support system that gave me the strength to fight it, and was very lucky to be transplanted when I did, before I fell off the cliff.
I have to say though, it was worth it. The moment I woke up the first thing I noticed was my feet were no longer itching. I think I laid there silent for like an hour waiting for it to come back, but it never did. To see my ALT, AST, and ALP drop to normal for the first time in my life was amazing. I'm 2.5 years post tx, and I feel pretty much normal. I really hope it will work out for you, and you never give up, because there's always a chance.
STK-AizenSousuke2 karma2019-02-06 19:16:20 UTC
Hey OP, both excited and sad to see other PSC patients showing up here. I've never met another in person. You mentioned your university. Are you living in Florida? If so, be sure to check in at the transplant center in Florida Hospital Orlando to keep on the ball. These guys saved my life and the level of care and compassion they have is beyond words.
Best of luck with your health and life.
STK-AizenSousuke2 karma2018-05-03 18:20:20 UTC
What I love about this discussion is the answer could literally be anything. We could most definitely be the first, or we could be the x-billionth. There could be another galaxy that has thousands of species living together in peace, while next door could be thousands of species at eternal war, while next to that a single species that has full control of thier central black-hole's power, while the next 50 galaxies could be barren. And this is not even talking about multiverse theory.
This thought is mind blowing, almost impossible to understand, scary as all fuck, and the most exciting thing about my existence. I want it to be true because how exciting would it be to learn from them and I don't want it to be true because of the scary implications of being prey to something infinitely more advanced.
My only regret? I won't be alive to see if it's true, or if it is, our governments won't ever tell us.
STK-AizenSousuke1 karma2019-02-07 04:40:10 UTC
Florida Hospital (Advent Health now), have been the only transplant team I've seen. My doctor busted her ass getting my case looked at, the surgeons, nurses, aides, all went above and beyond. I'm very lucky to have found them. 2.5 years after transplant, going strong.
If you have any questions or just want to talk, feel free to message me. Take care!
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