How Long

Hi have been quite well with my PBC diagnosed 4 years ago but like a lot of us on here may have had it years and years before finally getting answers. I am under QE now and go every 3 months usual bloods and scans in the past have had camera down finding grade A varices mild Hypertensive on meds and under control MRI Scan showing slightly enlarged Liver and Spleen and Cirrhosis also low Platelet count all other bloods not far from normal Bilirubin normal and still feeling quite well . I have read that a lot on here have much the same going on but after seeing Consultant last week he mentioned looking at all my results put together was looking at 3 years before Transplant time SHOCK my God just went totally blank my question being has any one been told how long it may be before they talk Transplant to you. I understood that PBC as a mind of its own and can affect every one in so many ways all at different times as far a how fast or slow progression takes so how would he be able to put a time on how long for Transplant. I take 1,000 mg Urso and latest scan on Mon was showing no change in other words no worse than last Scan I know we are never going to be told PBC is getting better because no cure but no change must be a good sign surely . So any one out there still going on pretty well after being told when your Transplant date might be can just remember catching him say better to get it done why you are strong than leaving it till things deteriorate perhaps he is right but still how does he know that will be 3 years . Take Care all XX

9 Replies

  • Hi there I've been diagnosed 17 years and told mine is slow progression. Even so I've asked about transplant timing myself and told if your in good health up to age 70! So in my mind that's given me a 14 year window now.

    My consultant uses an elevated bilirubin as main factor for transplant but try not to worry unduly. My friend has had transplant in last few months at Leeds and is a new woman. So try to think of it from a positive viewpoint, I'm sure your consultant will make the right decision when the time comes.

    Take care 😊

  • I was told about 5 yrs that I would need a transplant that was 4 yrs ago. Bloods slowly getting worse but he says unless huge drop no transplant needed. As you say this illness has a mind of its own but on average most people don't need a transplant and die of something else or old age( specialists words). Live for today and try not too worry. Urso seems to be doing the job for you. I'm one of the people that cannot tolerate it or anything else they've tried.

  • I was Dx'd 4years ago at stage 4. What my doctor told me is that even though I have cirrhosis and slight varicies I am still not in the decompensated stage. I think your doctor means you might be 3 years away from a possible transplant but if things turn worse for you they put towards the top of the list,

    If bilirubin changes you move up on the list. I have all your symptoms but we still are showing a functioning liver so we don't go to the top of the list yet.

    Confused? Me too! But the good news is we don't need a transplant yet!

    Good luck!


  • Sometimes clinicians make me cross. They can make educated guesses but cannot forecast how long we have left.

    I was told the same as you 2 years ago. TPossibly by the same person..The shock was horrendous. Also told I would probably be past my sell by date when I stopped compensating. I have had varices treated x 2'., have given up beta blockers as am unable to tolerate and feel better than I have for years. Serum bilirubin appears ok but we are probably at Same so-called end stage. Try not to worry. Get out there a d grab life. You may have years yet but no one, PBC or not can ever be sure.

  • crystal ball gazing can be difficult, and impresise! Drs. generally shy away from the answer to when in my experience. They have got an overall view of course. As for better sooner than later whilst maybe true, the reality is you will be at top of list when you are very ill and in need of transplant. For me PBC was diagnosed in Feb 13 (no symptoms what so ever) and transplant in November 14 so just over 18 months! here is something you will hear more than once " every one liver journey is unique"

    Stay strong, and remember there is life after tyransplant, I am now 90% healthy before transplant I was bedridden sleeping mad useless itchy gastric bleeding old git. Keep smiling. Stay strong.


  • I dont know, but to me it sounds good if the results show no deterioration. Ursotan very expensive and Discovery will not give it to me as Cronic condition, because very few people have sympathy with us. A liver transplant should be the very last option. With my auto immune and age, it will never be an option. If only I can get a remedy for the itch.

  • Hi Cavi,

    Sounds as if I am at about the same stage as you but my consultant has not yet mentioned transplant. Think it all depends on who you see. Sounds as if some are not very tactful. Hopefully we have a lot longer than a 3 year window before it really needs to be considered.

  • Hi Cavl not 100% on this but think I was told in Jan 13 that I would need a transplant within 2-5yrs and just had one in June. But fear not I m happy to tell you almost 4 months on am doing really well feel like a new woman. Today is my birthday I am 45 and so happy to be here to see it. Heading off on a little mini break to beautiful Donegal in Southern Ireland with my wonderful husband to celebrate the occasion and still being alive to see my daughter continue her Uni education and to be able to finish rearing my 8yr old son. So my advice is keep your chin up and keep positive about your future. i am now starting to really enjoy life aftet a rolllercoastet few yrs, specially the last yr before transplant. I had def started to feel my life was not worth living but thanks to fab husband and my lovely children i kept going. Am now so delighted to waken up every day and am looking forward to a much happier future thanks to my wonderful donor God rest her soul. As the saying goes Que serais serais whatever will be will be dont worry just stay happy and think positively thats what got me through to where i am now. Best of luck Cavl. X

  • Happy Birthday littlemo!! So great to hear you have had your transplant and you are feeling so much better. Enjoy your break away with your family xx

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