its me Snoozy, and ive been on this site for a while now. last week got told by RPA that im going on the transplant list.OMG!!!
mid January i have to go in to do work up to see that im fit enough to go on list.
would love to here from survivors and their experiences.Hopefully some good news to take away the stress! but im willing to here the bad stories too. hit me...im ready...i think(diagnosed 10.5 years ago)
Hi, I have not yet been thru a transplant but am too in your situation, I am going to the transplant clinic at the end of Jan. Can I ask why you have been referred? I have because my billirubin has been increasing.over the last year and I am.jaundice plus am very symptomatic, itching fatigue etc, I have been tested for all.sorts of over lapping conditions but following a biopsy last week, it seems.its the Pbc that's causing it. I too would like to hear from people who have been thru it, and its also great to talk to someone who is going thru the same as me. Best wishes Michelle x (34 yrs old, diagnosed 2009 )
Hi Michelle, the reasons for being sent to RPA is my recent biopsy shows over 50% cirhosis now in the liver and i too have extreme fatige and my itch is driving me to the brink of distruction. None of the meds are working on me i just do not resspond to everything they want me to try. so my Liver specialist said thats it ....time to go to the big guys. so thats where im at now. good luck with yours and keep us posted.
Hi both, I was in your place 16 months ago and had my gift of life in March. I know you're worried but put your trust in the professionals and they will guide you through the process.
As for recovery everyone is different but I was up and out of bed the day after the op and moving around the ward soon after. Of course there is discomfort and pain but I found the relief of not itching, being able to sleep and my skin returning to normal made everything bearable and each day things got better. I was out of hospital in a fortnight but had to return every week/2 weeks for checkups. I'm now 9 months post transplant and better than I've been in a very long time. I even went back to my job as a primary school teacher in Sept.
Good luck with the assessments and we're all here to help if you have anymore questions x
Anyone at some point in their life had their appendix removed?
Anyone been diagnosed with hypothyroidism since they've had PBC? 
Has anyone had pale colored stools as a side effect of ursodoil?
