PBC Foundation
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Failing gp

Hi I visited my specialist he asked too see medication's I take to my horror he informed me that he had sent a letter too my GP about starting uso a yr ago he has now stated I'mgoing to be looking at a liver transplant due to me being full jaundice itchy not sleeping basically this last 18 months have gone so fast has anyone had a family member who has been live donor my family said they would get tested but I don't want them suffer

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Hi katkatkat. It does seem to be a bit of a lottery out there with regard to the quality of your GP but this is surely inexcusable. The only issue is that it depends on what internal systems the practice uses (i.e. how much is paper based) as any letter could slip through the cracks and end up on the 'filing' pile rather than the 'action' pile. I've only had one consult so far with the liver specialist and I received a copy of the letter that he sent to my GP's practice. I assumed that was standard practice. As you indicate though it won't help you much now and unfortunately a lot of time has been lost resulting in you being in this position probably/possibly earlier than might otherwise have been. I hope it works out for you.


OH NO! I'm so sorry to hear this!!!! You can use a living donor - and they won't suffer. Their liver will regenerate as will your new one. They'll have healing time as will you - what that is I'm not sure.

I wish your specialist had prescribed the medication himself...I'm so sorry you're facing this.


I wish specialist had from now on he's going deal with what I need him self I have a lot of family members that have said they will get tested just reading up on different out comes of transplant some are scary saying can be fine for a yr others saying up too 10 yrs


that's wonderful you have so many family members willing to be tested. I've read that PBC will continue to happen to the new liver - but it will buy you more time and if you're on the medication it'll be better :) It's so individual - it'll be up to the monitoring that your doctor does to know how slow you're progressing after your transplant. I see my specialist every few months and get blood tests every month. I love that she's always monitoring me and it makes me feel better that she'll catch a change quickly if it happens. Talk to you specialist see if he/she would be willing to monitor you closer after your transplant so you're kept up to speed on it all.

again I'm so sorry you're dealing with this now :(


I used to see my specialist every 6 months now every 3 months said if need see before just ring blood test are regular have them straight from seeing him and the wk before I feel like human pin cushion but it's worth it


glad to hear he/she is following you so closely :)

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