UKELD at the time of transplant or listing

[Rshc]

hi, my partner is due shortly to have his assessment at the Royal Free. He is 7 months post diagnosis for alcohol related decompensated cirrhosis. Bloods were static so they felt he was as good as he was going to get so was referred for assessment. HOWEVER over the last 6 weeks UKELD has gone from 60 to 53 and biliruben now the lowest its been since diagnosis at 36.

We are a bit confused, he obviously is still meeting transplant criteria but seems gradually to be getting a little better. I don't know what to hope for - I am obviously delighted his hard work is paying off, that he is stable and out of any immediate danger however am scared that he will get just well enough to not qualify but not well enough for all the things he wants to do. And obviously with decompensated cirrhosis you are on a knife edge where the smallest thing can tip you over into being really poorly again.

Anyone been through similar, would be interested to hear peoples share their UKELD if they are comfortable to do so

thanks xx

[AyrshireK]

We were never told hubbies UKELD but were told he was 'borderline' when he was listed in 2014. Guess by borderline he must have just been over the minimum required of 49. Certainly not displaying any of the 'major' symptoms at that time.

[Flowergirl24]

That’s great news that his numbers are coming down. My UKELD was 61 and Bilirubin was over 500 before my transplant. It’s now 6 from my last bloods at the QE a couple of weeks ago.

[Yellowsydney]

My UKELD was 55 when I was referred to the transplant team, was never told what it was after that, not many people are told their score. They will go through everything at his assessment, there is more to take into consideration then just numbers.Hilary

[Ewife]

My thoughts are with you......as I've said before, it's all such a difficult journey.We are at the difficult stage where we are having a break from the list after having been on for 18mths. I'm all over the place emotionally. Trying to enjoy it but some days I'm so upset, and confused and worried.

Husband has UKeld of 54 or 61 with anti-coagulants which he has to be on. Really threw me when I saw this, as there's been no improvement in his condition. Its just simply that they haven't worsened over the year. Added to which, he's now on Rifaxomin and feeling much worse than he did 6 months ago.

Atb,

Ewife

Xx