British Liver Trust
13,651 members6,728 posts

On the list.... again or still?

Well for those that don’t know, I was listed at Kings back in March this year. I have since moved up north and Leeds are now my nearest transplant centre. So I went to see them the other day, they were happy to accept all my Kings results meaning I didn’t have to do a full assessment again but they asked me in for a couple of tests and to meet the team etc.

I’ve just had the phone call from them as they have had their meeting to discuss all newbies and they are accepting me on their list. Phew.

Brings it home again, she remarked that my UKELD is now 60, last I knew it was 58, and said I’m obviously very poorly and would need fortnightly obs. Don’t get me wrong I know I’m not well, I feel it, but you just get used to it, it’s not until somebody in the medical world enforces what you kinda know that, at least for me, makes you realise.

Along the path we continue...

(Don’t tell anyone, but I’ve got a feeling it’s gonna happen soon 🤫)

6 Replies
oldestnewest

Hi identity, well i am soooo pleased for you 😁. Not pleased that your more poorly now but the fact that at last it could well be soon now 🙏. To me its great news 😊

2 likes
Reply

Good to hear your on the list and I think your feeling may well be right mine was around 60 and I was in hospital because I was too poorly to be at home. Fingers crossed you will probably see a lady called Trisha at one of the clinics promoting the Leeds liver group she's a darling 😀

1 like
Reply

I really hope so fingers crossed. I never knew my meld score but they said I was hanging on by a thread and didn’t have much longer. Still didn’t sink in how I’ll i was lol even when I was being taken into surgery I thought they’d open me up and say my liver wasn’t as bad as they thought and to abandon surgery 😊 xx again good luck x

2 likes
Reply

Two weeks sounds well keen, I was only ever two months, if I had a problem they moved me up. 60 is getting their, worst I had was 61 when I was in for assessment, then it got better but hovered around the high 50’s. I had hoped you would be at Kings, then I could of come in and thrown grapes at you, and laughed at you shuffling round 😝😀👍

2 likes
Reply

I’ll see your UKELD score with mine. I apparently hit 61 at Kings but nobody said owt.

I think 62 onwards and you move up to the national team and get prioritised.

2 likes
Reply

I have to admit to personally never feeling much different between 61 or high 50’s so it just became another number, it just enables the team to get an idea of you liver health, meld and child Pugh score also taken into consideration, they never asked about my haribo ratio, which is odd! 😂

3 likes
Reply

You may also like...