Side Effects from liver transplant (Wilson survivor)

Emilia

Hi friends! I had Wilson’s disease and I just had my liver transplant a month ago and I’m experiencing some intense side effects. I’m wondering if any of you (who had Wilson before the liver transplant) have dealt with neurological symptoms. They started me on the immunosuppressants (Tacrolimus mainly) and one of my eyes isn’t working, I’m experiencing loss of sight on one eye, I can’t really ready (people are helping me write this), I can’t speak very well, I feel so tired. Doctors say it’s from the Wilson’s that I’m experiencing this but I was wondering if any of you could help me with your experience. I feel very tired and although I’m extremely grateful that the new liver saved my life, I’m wondering why I’m having all these neurological side effects and how long with they last,

thank you

AliEm14

@DannyH - can you help?

i had a liver transplant (no Wilson’s disease) and those initial weeks are rough. Hoping our Wilson’s community can lend a hand

eachone

Never had Wilsons prior to any of my transplants so I don't know how I could help in that sense. The only thing I can offer is that I did experience similar symptoms (minus the vision part) so it's nomral to have some of those fatigue issues after surgery. I remember I was always so tired and with my first transplant, they had me on Predisone for Ike 4 months after surgery. That combined with the tacrolimus, It really screwed me up mentally and physically. Eventually it passed but took some time. Best advice is to keep advocating for yourself and asking those questions to your liver team. I hope the best for you.. Hope your quality of life improves. Never give up! 🙏🪽