Update: Hi everyone! Hope your all as... - British Liver Trust

British Liver Trust
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Update

jules45
jules45

Hi everyone! Hope your all as well as to be expected. Latest news is I've got dysplastic nodules and I'm child Pugh score c. How likely do you think I will be put forward for transplant assessment. I'm under Birmingham but I've only been once, due again 28th november, and having lots of Mir scans and seeing regular hepatologist 4 weekly. Says my liver very brittle. Feel tired all of the time and partner moans about my disabilities.

Any thoughts gratefully received

Julie xxx

22 Replies
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You MUST ask the question of your doctor Jules, this has gone on way long enough and at Child Pugh C you are way more poorly than my hubby ever was yet as you know he was assessed and listed for a period (although they had to delist 'cos basically he didn't meet the criteria any more). Please push, do not wait until it is too late.

Rooting for you.

Katie

jules45
jules45
in reply to AyrshireK

Hi Katie, my situation just gets worse and as you know I've been I'll for a long time. I've not even had a biopsy and they are talking cancer. Hep at Birmingham wasn't very helpful last time, let's hope he is next time. Julie xxx

AyrshireK
AyrshireK
in reply to jules45

Just to point out that Dysplastic Nodules arn't necessarily cancerous. "Dysplastic liver nodules are focal nodular regions (≥1 mm) without definite evidence of malignancy." radiopaedia.org/articles/dy...

It is shocking you've been left this long.

Best wishes to you, Katie

Hi Jules. Hard to say how long you will have to wait. It was Professor Mutimer who put me forward for assessment. Who did you see? As I told you, I was transplanted within days of assessment but I have a friend who had a transplant which was rejected and he's quite ill but has been waiting much longer for re-transplant than I was waiting for my TP. Just make sure you ask if you can be put forward for assessment every time you go to B'ham

jules45
jules45
in reply to Jans1953

Dr Horton is in charge of me at birmingham and I'll take your advice and ask. Glad your ok but sorry about your friend xxx

Jans1953
Jans1953
in reply to jules45

Not come across him so can't comment on him. It's hard for them to be consistent though because you see a different person most times at the QE outpatients. Ask about your UKELD score as they use that to help them decide when to put you forward for assessment although it's not the only thing they use. Minimum score is 49 for transplant but most people at at least in the 50s.

jules45
jules45
in reply to Jans1953

Hi, thanks for reply. I've seen it mentioned many times on here but what is UKELD. It's never been mentioned to me xx

Hidden
Hidden
in reply to jules45

Hi Julie

Fairly new here so have not yet read all your posts 🙁. However I have been through a similar experience..

I had been going to liver clinic for about 3 or 4 years (can’t remember - brain fog 😁) at Derby hospital. Fortunately I eventually saw a fantastic consultant who said I couldn’t go on “like this”!

Well, very fortunately the wonderful Prof Mutimer (same as you Jan!) holds 3 (?) monthly joint clinics with Derby. Derby were reluctant to put me forward for a transplant because I had other medical issues. But the wonderful, I’ll keep saying wonderful, Prof Mutimer said get your “ as* “ down to Birmingham and I’ll sort you out! Actually he never said anything of the sort because the wonderful Prof Mutimer is the most polite person you could meet.

So I did get my .. I started going to the liver clinic in Birmingham.

It was a long haul but after about 18 months and lots of HE episodes later I got on THE LIST. Wow I would have got the flags out if I had any!

8 weeks later all done, a “new liver” - thanks to, as all of us tps say, the very very generous donor and his family, I am like a new man - and I eally mean that. All I’ve got to do now is finish the tablets that stop me sleeping proper like!

Brain fog still with me a small bit but I found out, thanks to jojo, that HE damages your brain to some extent, I now consider myself damaged. Pity I can’t take it back to the shop for an exchange!

Anyway you can tell I’ve got time on my hands and “I know nothing “ except what I’ve been through . But as you gather, no doubt, there are lots of people on here that DO know. Umm Katie being one!

All the best, Julie

Miles

🇧🇧

jules45
jules45
in reply to Hidden

Hiya, thanks for your reply. My situation has been going on since my firsst liver failure in 2010 and 3 failures since, here I am. Like you, i have a wide variety of other ailments and the docs are too scared to put me under but I can't stay like this. I look permanently pregnant as my liver and spleen are so enlarged that my confidence has gone and I dread buying clothes and just keep sending them back. I was allowed to fly last year, had a happy healthy time until my holiday shortly after to Tenerife where the hospital gave me injections for back pain which were toxic to my liver causing me failure and internal bleeding so not allowed to fly next year. I am ñew to Birmingham and my usual hepatologist here is lovely but haven't got to know the Birmingham man yet. Will post again when I see him at end november.

Thanks for support

Take care, Julie x

Hidden
Hidden
in reply to jules45

Julie

You realy have been through it! I have bever heard of 3 transplants - one is quite an “experience”!

Birmingham’s busy isn’t it! But boy they know what they’re doing!

Good luck and please keep us informed if you can/ want to!

Miles

🇧🇧

jules45
jules45
in reply to Hidden

Hi, i didn't have 3 transplants but had 3 liver failures which I survived

Take care, Julie xxx

Hidden
Hidden
in reply to jules45

Ah OK - but to be honest I don’t know what a liver failure is?

🇧🇧

jules45
jules45
in reply to Hidden

It's when your liver fails to function and some people die, others survive. You go yellow and in my case I swelled up with fluid also. Xx

Hidden
Hidden
in reply to jules45

Aha got it Julie thanks.

There was chap in his 30s came into our 4 man ward and he looked quite yellow but he was as happy as larry. But day by day he got yellower and yellower and started to get more and more morose. He had never been to hospital before for liver issues (as far as I could determine) and certainly had not gone through the usual tp Assessment route.

Anyway I could tell by the way the doctors and nurses were talking to him he was being lined up for a tp. And I told him so - lol maybe I shouldn’t have done that! Anyway the day after that he was whisked away to a single room and the very next day had a tp.

Sorry maybe no real relevance to you Julie except to say you did (3 times) remarkably well to recover without a tp so far. Since you are being looked after by Birmingham you are in good hands (speaking from my experience and thousands of others!).

None of us can say how long before you get a tp. The first target is to get on the tp list, THE LIST, thot took me about 18 months, but it will obviously differ depending on the urgency. You then have another waiting game before a matching liver, and one that they decide is good enough for you is available. Quite often the tp is called off after you have been “summoned” 😁 to hospital and undergone more tests for several hours, but then the doctors examine the liver and decide its not good enough for a tp - in my case the first donor liver was considered too fatty - in which case it’s back home and wait again!

So basically the question is like “how long is a piece of string”.

Whatever happens I wish you the best of luck and here’s to a successful recovery.

Miles

😐

jules45
jules45
in reply to Hidden

What an interesting story, so now you know what liver failure is all about xx

Adelou
Adelou
in reply to jules45

Your UKLED score is how long you might survive without a transplant if things keep going the way you are

My hubby had a score of 60 prior to his transplant which meant that he had 50% chance of surviving the next 12 months without a transplant

jules45
jules45
in reply to Adelou

Hi! No one has mentioned UKELD so thanks for telling me what it means. The word pathway is used a lot though? X

Adelou
Adelou
in reply to jules45

I guess it depends which hospital you are at

Hubby was at the royal free in London

You should ask though as you have a right to know you have to have a score of 51 to be considered for transplant... Well it was back in April unless it has been changed

jules45
jules45
in reply to Adelou

Ìvè only just been refeŕed to Birmingham so immyet to see what the quality of care is , thank you, Jules x

Hidden
Hidden

The rules surrounding listing for a transplant did change earlier on this year. Now it is based on blood results only and I have been told that even over 50 there is no guarantee that you will be listed as the aim is to have you on the list for the minimum amount of time. From what I have been told it is based on results only. Before, there was input allowed from the consultant, but no longer.The bloods give you what is known as the UKELD score and then it is taken from there. Of course it is a fine balance between being well enough to undergo the transplant and ill enough to need one. I can't tell you any more than that I'm afraid. I wish you well going forward and hope that you get the answers you need to help you. All the very best :)

jules45
jules45
in reply to Hidden

Thankyou every one for your advìcè and empathy àñd taking the time to replý tò mè

much thoughts to you all

Love Jules x

Thañkyou for that info, much appreciated xxx

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