Hi I have bn diagnosed for few years now and bn on urso which now isnt working so I am now at stage 4. My consultant had referred me to transplant unit but my condition wasnt serious enough at the time however im due bk in 3 weeks to be reviewed again. I have raised lvts way up at 190,nauseau, fatigue, enlarged spleen, varices and just out of hospital with bleeding ulcer. To me life is unbearable at the moment and was wondering if anyone has bn on transplant list knows how ill you need to become before you will be considered? Thanks in advance x

11 Replies

  • Hi there sorry to hear you are having such a rough time of it. I m currently on the transplant waiting list, have been on it for 6 months. Getting on the list is based on a score you get called thr UKELD score. It is based on things ike how your liver is functioning (lft's) , the main things they look to are the amount of bilirubin in your bloodstream, how well/rather not your blood is clotting, andwhow your kidneys are/ not functioning. Basically the higher your score, the more likely it is that you need a transplant. IN UK think if memory serves me right, a score of 49 or more mean you should be put on the list. Hope that helps you. BFN.

  • Im at stage 1 what were your systoms

  • Hi when i was diagnosed i was at stage 2. Symptoms were cold all the time,itchy all over,abdominal pain. I was started on urso which worked for some time but lately my condition has rapidly got worse. I am just out of hospital after 12 days and am finding it very hard to function at all these days. I noe have raised lvts,varices,bleeding ulcer,nauseau,fatigue,abdominal pain,lower bk pain,dry eyes,itchy skin,loose bowel movements,dark coloured urine to name but a few.I am currently unable to work at the moment either as my body is just not up to it.I get up around 7am in the mornings and by noon i am bk in bed for a cpl of hours at least.I really hope your condition never progresses like mine and hope you be fit and well for many years to come,Evelyn.

  • Hi thanks for the information given will look up the ukeld scoring system to see what i can get from there.Go back to see transplant specialists in 3 weeks so hoping i am now able to get on the list.Hope you are doing well and do not have much longer to wait before you manage to get a transplant. I will certainly keep my fingers crossed for you and wish you well.Thanks again Evelyn x

  • Hello Evelyn1

    I have no experience with your question however if you contact the PBC Foundation directly they may be able to give you some ideas. I do wish you well and hope you do not have to wait too long.

    best wishes

  • Hi Ev I have been Stage 4 for five years now. Transplants are ususally done with patients with end stage stage 4. That usually is varices and ascites. But having varices and a bleeding ulcer should put you close to the top of the list. Are your eyes tinged yellow? Your skin?

    Check bilirubin that lets you know how much your liver is functioning.


  • Hi I have been diagnoised with end stage 4 but at the time my bilirubin was raised at 88 all other lvts were normal whereas now they are way up in the 190s. My eyes have been yellow for some time now along with my skin colouring. I am just out of my local hospital after 12 days and lvts are still raised I only got out because I am due back at transplant clinic 3 weeks today.I have got to go to my gp for the next 3 weeks for check ups and bloods so Im currently waiting blood results again this fri but I doubt that thay have fallen and if they have certainly not back to a safer level.My gp is so good with me but only so much he can say and do now because Im now under the care of the transplant unit presently just as an outpatient.

    Evelyn x

  • Evelyn - are you in the UK or the US? See if your gp can call them and make some noise. Sometimes if they insist on how awful you look, quality of life, bad test results and only getting worse it may have some kind of impact.

    I'm sure the next time you go to the transplant unit they will be forced to add you to the list.

    Please let me know how things are going. I am thinking of you.


  • Hi I am in Scotland. Gp was in touch with them just before i was admitted to local hospital but I have not heard back from them. I think because it is 3 weeks now till my next appointment that they are just going to leave it till then,somedays i wonder how Im going to get through a day never mind 3 weeks but guess these guys know best.My gp this morning has said that I am now unwell enough to be on that list so I will be fighting for it all the way as my quality of life these days is pretty much nil. I am unable to work now and am back in bed unwell around midday everyday for a few hours,this is not down to laziness it is my body cant do much at all.

    Nothing normally gets to me but since getting out of hosp last thursday im like an absolute zombie and think this has finally gotten a hold of me. Im a fighter and wont give in but most days the disease wins and i have no alternative but to lay down to it.


  • Hello Evelin, I am male 68yrs.old and was diagnosed 13yrs. ago with PBC and although I suffered with itching, varices and continually feeling cold my biggest problem was the extreme fatigue and confusion.

    toward the end of last year I was getting so fatigued and unable to concentrate on the most simplest of issues. My local consultant referred my to Kings College Hospital where I was considered for the transplant list. My concern was because of my age and getting more tired I would be considered too old and ill to undergo major surgery. I put this argument over forcibly and despite my worsening health I did everything I could to keep as fit as possible. I am not certain if my LVTs were bad enough but I was put on the list in Aug. 2013. I was given a transplant in Oct. last year and after an extended stay in hospital due to catching infections I am now at home and slowly getting better and returning to some sort of normality. Without the transplant and the fantastic care I was given in the hospital I would not be alive now.

    I hope by telling my experience it will help you put some perspective on your situation I can only recommend you emphasise how tiredness can destroy your quality of life and I believe the LVTs do not always demonstrate this. Best of luck Evelin

  • I'm also sorry to hear you are having a rough time, I have been on the transplant list since December 2014, I to am on urso but not working for me, I also suffer with terrible itching which nothing worked for me I also have enlarged spleen with varices, last yeat I was admitted to hospital for 2 weeks with very low potassium which I was told I was lucky to be alive, since then I have been diagnosed with renal tubular acidosis type 1 which have been told is associated with Pbc, I got diagnosed with Pbc in 2005 - all the best when you go back in 3 weeks time - Tracy x

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