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maimypie9 karma

My older brother has (had) the exact same 2 diseases! He was kept on steroids and multiple medications until he was in his twenties, he got put on the transplant list (uk) but the quickest way was a live donor! So (after a crazy amount of deliberation and tests on family members) my sister ended up giving 60% of her liver. Unfortunately he never fully got better from that and he ended up back in intensive care as his body had destroyed like 80% of it in a couple of months! He ended up having an emergency transplant from a deceased donor that worked. The recovery was slow but he’s healthy as he can be now, a couple of years on :) sorry for the long comment, but I thought you were him when I first started reading and it brought it all back! My question is, how has it effected you being on immunosuppression? Like when you eat places, or even go to your friends house for tea? People don’t realise that you have to be super careful, like a pregnant woman, basically for the rest of your life afterwards.

maimypie7 karma

It’s not stupid, it’s one of the things we asked about! Basically there’s 2 lobes, they took the entire of one side of hers and the other side is what grows back. So she only has one lobe, but it will have grown back to about 90% of the size her liver was. So it doesn’t fully grow back but mostly, and the other side (if it had worked) would have done the same in my brother too. Neither of them have a gall bladder any more though.

maimypie4 karma

I know, right? At least if she ever needs a kidney he can’t say no

maimypie4 karma

I’m glad it’s balanced now! The balance of my brothers drugs are so careful, they reduced one of them minimally and he ended back in hospital! That must have been so tough, especially in your formative years! Do you think it’s had an effect on your personality? Or how you are with people?

We were just a lucky coincidence that all 5 of our family were the same blood type (A+, my dad called us the A-team bless him). I don’t think it’s that common for others wanting a live donation!