Listed but improving UKELD

[Rshc]

This is a bit of a strange one. Partner has decompensated cirrhosis, listed about 4 weeks ago. We cried with relief when he was listed - he has been so poorly and had a heart scare (that turned out to be nothing when investigated) so were SO SO grateful to be listed. However UKELD has improved slowly but surely - it was 60 in May , 56 at listing and 53 at last bloods. We worry now that he will still need a transplant (he is in pain all day every day, and has terrible fatigue) but with a UKELD at that level will never get the call. I know we should be celebrating improved bloods as he has worked so hard to get here.

We know transplant isn't a cure and its only the very sickest that are offered this route but he actually feels worse now than he did when his UKELD was higher.

I'm not sure what I am asking really, did anyone get transplanted at the lower end of qualifying UKELD?

thanks

[Hidden]

I feel sympathy for everyone involved… my husband has pbc and has mild he plus a large vein down his stomach… I’m worried constantly about him!

[Rshc in reply to Hidden]

so sorry about your husband, it is such a worry isn't it x

[Lippy42]

thinking of you ❤❤

[Ewife]

know how your feeling. My husband was listed Jan 21. Despite feeling sicker now than he did then, because he has stabilised he is now having a break from the transplant list. Still on there, but not activated. There are days when I feel sure they are going to delist him and days when I feel like he's so much worse, I can't face the thought of living like this for- how long? Waiting for him to get worse? What a horrible idea.....likewise, although he doesn't really want the transplant unless it's necessary, he gets quite down and frustrated with his limitations - which is new. He hasn't struggled with that before. They are reviewing him again in December and I'm already getting nervous. Trying to make peace with how he is so that I'm not pinning everything on transplant but I'm still really struggling with it.

Atb, take care. Hopefully your experience will be very different to ours!



[Rshc in reply to Ewife]

waiting for him to get worse is exactly like I feel, he will never recover so we tread water until something happens. There is so much he cannot do, the thought of him going back to work for example is just beyond anything he would be capable of. I can remember when he was first diagnosed and I was just desperate for his liver to recompensate and his bloods to improve and I would have been delighted to be where we are right now but improving bloods have not equated to improvement elsewhere

[Porcupine_Tree]

There are other factors , not just UKELD. Check out the NHSBT website. More importantly speak with your Hepatologist.

Good Luck

[Rshc in reply to Porcupine_Tree]

thank you, have had a hunt around on the donation website but cannot find anything useful other than stats on current waiting lists (which is interesting to my nerdy brain) - do you have a link please? Also worth mentioning he is blood group A which I know can mean a shorter wait. I feel so ungrateful, I hope it doesnt sound as though I am wishing him to be sicker, it is such a confusing time right now

[Porcupine_Tree]

nhsbt.nhs.uk/organ-transpla...

[Yellowsydney]

You need to discuss this with his coordinators, there are more things taken into consideration then just his UKELD, most people are not told their score or even know what it is.

If you use Facebook please feel free to join out friendly and knowledgeable group called liver transplant support uk.

Hilary

[Rshc in reply to Yellowsydney]

thank you, we are members of the group. We have an appointment with his co-ordinator in a couple of weeks so will discuss then.