anyone out there been referred for transplant assessment twice ( or more?)

Hi to all my fellow PBC'ers,

I have just got back from another endoscopy, where they have tied off 5 more varicies ( this subsequent to the last five I had tied off six weeks ago).

I saw the nurse speciaist and she said my bilirubin was eleveated again and that they were repeating the blood test and if it was as bad as before ( actually they also suspect it maybe worse than the previous one, and I agree I am looking more jaundiced now) they will refer me back to the transplant centre for assessment again ( they have apprantley agreed to see me again based on my bloods)

I had a weeks assessment in a transplant unit in July last year only to be told my liver had "bounced back" after its crisis? his meant I was not suitable to go on the list at that time. I wondered if anyone had been through a second assessment again, and if so did they have to have all the pre assessment transplant tests done again?

I HATE this disease and its unpredictability!

10 Replies

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  • Hope it "bounces back" for you again this time. Sorry am not much use as I have not been in that situation yet but just wanted to wish you good luck. Let us know how you go on.

  • thanks zipitydoo,

    it is quite a funny image isnt it the thought of a liver bouncing about like a rubber ball.......... I swear my sense of humour is the only thing keeping me going sometimes :-)

    will let you know - I expect I will get a phone call or letter.

  • Just want you to know that you are in my prayers. And remember they say......Laughter is the BEST medicine!

    BIG Hugs

  • Thanks Kosy2 - I agree re the laughter!

    Will keep you all informed how I get on.

    x

  • thats an awful situation to be in busy lady.... when were you diagnosed with PBC? i agree with kosy2, keep smiling and laughing!!!!!!!!!

    xx

  • Hi Posh

    I was diagnosed in April 2010, I guess on reflection I had been ill for a while, but like most women had "pushed through it" thinking it was just a case of juggling work, having 2 very sporty teenagers who needed transporting to clubs etc etc plus my Mum living with us who has some care need that I see to ( she is disabled). To be honest when I went to the Doctors I had self diagnosed myself with an underactive thyroid because I was so tired. Boy, how wrong was I!!

    So when my GP got my bloods back he was mortified, thyroid OK, LFT's "pants". I was referred to a super Consultant, who is very good and thank goodness my GP is also extremely supportive (unlike some of you poor guys out there who seem to have a nightmare with the Drs) so I do consider myself lucky.

    After diagnosis I was put on URSO and trundled along nicley till last June 2011 when my Hubby and I went for a few days away.Unfortunately I became quite unwell quickly, got a very swollen abdomen, and then had an internal bleed ,so I ended up been admitted as an emergency.

    After that I went for my first assessment for transplant. Had a week of been prodded and poked, but it was OK really. However, I was not deemed ill enough at that point to have a transplant, but they reckoned in 2 years I would need one. I guess I am speeding up a bit by their calcs, BUT bizarrely.................and this is the odd thing isnt it, I actually dont feel that bad, BUT my bloods say otherwise ( and my portal hypertension evidenced by my oesophogeal varicies ha ha). There have been times in the past where I have expected my bloods to be bad coz I have felt terrible, and they have been OK.......................its an odd, and frustrating disease PBC isnt it?

    This forum is excellent isnt it, for the support and sharing of information - thanks everyone :-)

  • Sorry to hear of all you have been through. Only diagnosed a couple of months ago so not able to offer you any advice but will be keeping you in my thoughts. x

  • Sorry I cant offer any advice as not been there myself. What an awful situation to be in..thoughts are with you.

  • I think we all feel the same as you that it is the unpredictability of PBC that is frustrating. Hope all goes well and that your liver "bounces back again". Keep up the positive attitude. It will help you get through whatever comes your way. Take care. x

  • Thanks everyone

    I got a call from the nurse to say my biliribin was up and I would be referred back to the transplant unit ............will let you all know more when I do.

    I thank all of you for your support, it means so much.

    x

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