meld. And ukeld scores

[Mango5cm]

My son has compensated liver cirrhosis and I check his blood tests and reports as no one really explains them . His meld score is 11 and his ukeld score is 58 . I’ve been told by liver specialist nurse tgee as to they g do not take into account the meld score as it’s not accurate . Why do they do both ? C please can anyone explain the scores - are they good or bad what do they mean . Thank you

[AyrshireK]

Hello Mango, what age is your son and is he under the care of a liver specialist doctor? - I note he sees a liver specialist nurse. Does anyone attend appointments with him so that pertinent questions can be asked. It sounds like some discussions need to take place so you both get all the information you need.

If you are in the UK then they used the UKELD (United Kingdom Model for End Stage Liver Disease) score to try to ascertain prognosis/transplant need etc. When you say you check his blood scores are the numbers you quote actually written on your son's reports and has there ever been any discussion about potential transplant assessment?

I note you say he has a diagnosis of compensated cirrhosis, do you know the cause of this and is the cause being managed?

Without causing alarm & without knowing more information I would just say that in the UK the minimum score for transplant listing is a UKELD score of 49 so it would appear your son's scores reflect a score where he could be potentially in transplant territory but it depends on cause of ill health and whether or not he is actually able to have one,

MELD tends to be more the international scoring system (Model for End Stage Liver Disease).

UKELD is calculated based on INR (blood clotting time)& Serum Bilirubin, Serum Sodium, Serum Creatine levels.

It sounds like your son potentially needs some support at clinic appointments to get the full information needed as to what is going on with his situation and care plan going forward. I have been supporting my hubby at all his appointments since he was diagnosed with cirrhosis due to auto immune liver disease back in April 2012. I have learned about the condition using the BLT website and this enables us to make the most of appointments, ask the questions we need to and better manage hubbies condition.

Katie

[Mango5cm in reply to AyrshireK]

Thank you soMuch for your very helpful reply . My son is 62 and cirrhosis is alcohol related - he stopped drinking in October . He has seen a liver specialist twice -I went with him with his wife the first time but now I’m in hospital with a broken shoulder ! His daughter and wife went the second time but the consultant didn’t answer all their questions . Now he’s leaving in two weeks and Darlington haven’t appointed a new specialist .

May 20th his Ukeld score was 44. July its 58

Meld was 12. Then 11 .

No one has discussed a transplant .

I’m 78 live on my own and only have Stephen and a sister in New Zealand . I’m so worried about him and it’s all I think about .

[Mango5cm in reply to Mango5cm]

Hi Katie - I forgot to say his last blood test was 14th July billirubin creatinexwetexeithin normal range and sodium was slightly low . His platelet count was normal . He’s getting blood test tomorrow . I hope you and your husband are managing . Xx

[AyrshireK in reply to Mango5cm]

If I were your son and/or his wife I would be requesting a referral to the Freeman at Newcastle which would be your nearest transplant unit. That's not to say he necessarily needs a t/p at this time - it would depend on how serious his symptoms are BUT with a UKELD of 58 he should at least be seen at a proper liver unit to 'touch base'.

It's great that he has ceased drinking - that needs to continue and he'll need to commit to that going forward.

[looby24 in reply to AyrshireK]

My husband's score is based on MELD which counts INR, Creatinine, Biliburin and Sodium. (same as UKELD?) I find it a bit confusing that with MELD he's classed as outwith the transplant range and with UKELD he's within. I think I need to study this a bit more ....

[BritishLiverTrust4]

Dear Mango5cm

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Moux1]

Hi there , I noticed you live in Darlington , I’m not far and my husband is under a good liver specialist and team at North Tees. Would it be possible that he can be referred there

[Mango5cm in reply to Moux1]

Moux1Thank you for your reply . The liver specialist in Darlington is leaving in 2 weeks and they haven’t appointed anyone else - he was going to see my son before he leaves but now he won’t be. It’s so worrying . Please can you tell me the name of your specialist . Hope you are managing to support your husband and you have support as well . Regards

[Mango5cm in reply to Moux1]

hi. -6 month ago you suggested we try and get my son referred to North Ters to see a liver specialist . Today he saw Dr R D ( not sure if I can give full name ) and thankfully she is doing tests and is going to refer him to Freeman’s hopefully got a transplant assessment . I’m so glad you suggested North Tees . I hope your husband is responding to treatment . Best wishes Carol

[Moux1 in reply to Mango5cm]

aww it’s good that he is getting sorted and you’re very welcome. My husband is doing well thank you , take care xx

[Kristian]

Hi Mango

I think Ayrshire K has already set out the difference between MELD and UKELD pretty well so I'll not duplicate that. In Simple terms UKELD just takes additional measures into account, basically the sodium result as apparently that is an important indicator in liver function. MELD is quite old now but i know some doctors still use it as a bit of a guide. I cant remember if it still is, but it did used to be in the guidelines the doctors used, so its not a surprise its still referred to.

Your sons doctors will be keeping an eye on your son for signs of progression. Between you and me it doesnt take much derangement in blood tests to give a UKELD score above the 49 level Ayrshire K refers to (I did a little play with the numbers in the algorithm before I had my transplant just out of curiosity, lol. Yes I really am that sad 😆😆😆). Sodium seems to be a big factor in the calculation if i remember rightly, so if there's been a dip in the sodium level then i can see why his score may have changed.

With liver disease blood test numbers can jump around a bit, and the doctors tend to look at the longer term trends. If there is a bit of a spike then they may look to see if any addition treatment or medication is required, but usually they'll probably do another blood test first just to make sure its not just a bit of a blip (I think you mentioned he was scheduled for another blood test and that'll be the reason why). So try not to jump to conclusions either way from the result of an individual blood test.

Your sons medical team will be monitoring him throughout and the UKELD score really is only part of the picture. There's plenty of other factors to take into account before any decision for referral for potential transplant is considered and it doesnt sound from what you describe that your son has any of those symptoms or complications yet. So that's a good thing.

Ayrshire K mentions potential need for referral to a specialist liver centre. Of course that can be beneficial but its not always necessary. You'll also probably find the hospital treating your son will already have links to one they can seek specialist advice from too should the need arise. It may though be a question worth your son asking next time he has a clinic appointment, especially if his score continues to be high.

Do take up the trust's offer to contact their helpline. Ayrshire K always gives good advice but the peeps on the helpline can go through things with you in a bit more detail than we can here and hopefully that'll be helpful for you too.

Good luck to you both 😊.

[Mango5cm in reply to Kristian]

Thank you so much for your reply . I didn’t realise sodium levels were so important and no one explained that and often we don’t know what questions to ask . This is all new to us I never thought I’d be analysing blood test results . I’ve just joined this forum and the help from people in the same situation has been so reassuring . I hope you are keeping well . Best wishes

[Kristian in reply to Mango5cm]

I'm doing great thanks. Just about to start Transplant Games which are taking place in Leeds this week. Volleyball for me today, lol, ten pin bowling tomorrow and some athletics on Sunday. I may be a bit tired come Monday 😆😆.

[Mango5cm in reply to Kristian]

Wow - that’s wonderful . Good luck I’m sure you’ll enjoy every minute of it . X

[Readlots in reply to Kristian]

Good luck with the games!

[Kristian in reply to Readlots]

Many thanks 😊 👍

[Rshc]

Something doesn’t quite sound right with the UKELD if most of his numbers are close to normal. My partners is 58 and that is driven by bilirubin 50, sodium low, INR still quite high. I would ask for someone maybe a specialist nurse to talk you through latest bloods and calculate UKELD. My partners cirrhosis is decompensated, he feels quite poorly all of the time and is starting transplant assessment

[Mango5cm in reply to Rshc]

Thank you so much for your reply. This is all new to us and it’s really helpful to hear from people in the same situation. We are trying to be positive but it’s so difficult when I see my son so ill and it’s even harder for his wife who is caring for him . Thinking of you and hoping your husbands assessment goes well .

[Roy1955]

Are you calculating those scores yourself?If yes get an expert to calculate again.

Your saying compensated but also that he is quite ill.

Those scores and "quite ill" don't really fit in with a diagnosis of compensated.

Never heard of compensated needing a transplant because the livers working and not causing life threatening illness. (someone correct me if I am wrong)

[Mango5cm]

Thanks Ray I meant to say decompensated due to alcohol . He hasn’t had any alcohol for at least 8 month . He’s had blood tests today and hopefully they’ll be stable . He’s going to get a permanent drain fitted as he has ascities .

[Mango5cm in reply to Mango5cm]

Sorry meant to say Ray !