YKELD/Childs Pyfh

[Bs1524]

Can anyone explain how my husband can have a Chikds Pugh score of A6 and the UKELD score of 50?

[AyrshireK]

I guess that it's because both are calculated differently using different markers.

UKELD (United Kingdom Model for End Stage Liver Disease) is calculated purely on bloods - Serum Creatine, Serum Bilirubin, Serum Sodium and INR (blood clotting time) whereas Child Pugh Score brings in presence or absence of various symptoms (and their severetity) as well as bloods & includes different bloods than UKELD :- Child Pugh looks at Bilirubin, Albumin, INR and degree of ascites (if present) and degree of Hepatic Encephalopathy (if present).

Katie

[Bs1524 in reply to AyrshireK]

Thanks Katie it just seems one appears good decompensated doing well the other puts him in transplant territory

[AyrshireK in reply to Bs1524]

Child Pugh A certainly represents compensated cirrhosis. Whether 50 UKELD alone would be transplant territory is doubtable - 49 'used' to be the minimum required for transplant listing but that would now only be done based on transplant benefit score and taking in lots of other factors.

Katie

[Bs1524 in reply to AyrshireK]

Thanks again when he was first diagnosed he was UKELD 51 then 49 then 50 while his Child’s Pugh dropped from C10 to A6 the scores appeared contradictory to me

[AyrshireK in reply to Bs1524]

Did he have more symptoms when he was first diagnosed? That would account for higher Child Pugh. I am guessing my hubby bounced about though we have never been told any of his scores other than when he was first listed for transplant in 2014 and they told us he was 'borderline' for listing so I took that as only just hovering round the UKELD cut off. This time round we weren't told anything just that he was the risk of him not being around in a years time was higher than any risk posed by going ahead with transplant.

How is hubby doing? I know you posted a while back that you'd discovered he was drinking again. Hope you are looking after yourself.

Katie

[Bs1524 in reply to AyrshireK]

He is much the same still drinking although a less he has a big tummy and not taking his tablets the way he should. I will admit he has defeated me with this. I have accepted this is what he is going to do and unless he decides to change I can only stand by and watch. He is amazingly well considering but I guess that’s the way it can present until his liver can take no more. He was so well I actually thought they had misdiagnosed him

[Grassroots112 in reply to Bs1524]

I’m so sorry you are having to witness this with your husband and I’m equally sorry he is living with cirrhosis and continuing to drink, you don’t need me to tell you how this is going to end for him if he somehow doesn’t stop drinking and stop forever soon.

While it’s always never too late to quit, you have to fear what more damage the alcohol is continuing to do to his liver in between and maybe him presenting well has giving him a false sense of immortality, the alcohol intake alone will certainly give him that sense which demonstrates how wicked alcohol is and can be.

It’s tragic reading about your experience and I can’t imagine how tragic this has been and still is for you and again even your husband who I guarantee will be desperately knowing he’s killing himself and likely desperate for help, any help, but we all know that can only really come from within himself.

I have no advice to give or offer other than to wish yous both the very very best of luck and I sincerely hope whatever happens you never blame yourself or feel like you could have done more, you just witnessing this is more than enough because many refuse to just stand by and watch, and who can blame them. I say ‘just’, you’ve done your bit and some by sticking round, supporting, seeking help and advice and being there for him.

As a retired drinker myself I know only too well the harm, self loathing and fear even that alcoholism creates deep inside the drinker, it truly can consume you all the way to death.

Hopefully he will stop drinking and for good very soon because that’s the only way out of this or maybe this is his way out…

I drive a lot and often wonder when I see a vehicle broken down… who recovers the recovery truck?! Good luck and please take care of yourself above all else. All the best!

[Bs1524 in reply to Grassroots112]

Thank you unfortunately he seems to have convinced himself that it had all gone. I am not sure if is aware of the significance of the swelling tummy or not he will not discuss it as in his words, "It had all gone"

When first diagnosed he had more symptoms however on stopping the anti nausea meds he became himself once again. Then became so well I doubted the original diagnosis although the meds could not have caused the blood results.

[Grassroots112 in reply to Bs1524]

Is he eating much if at all? I know it’s been shown in people with advanced liver disease and cirrhosis, those who somehow manage to maintain regular food intake tend to fair a bit better than those that don’t or can’t when still drinking.

Regardless if his swollen stomach is indeed ascites, he’ll not be doing so well soon enough.

[Bs1524 in reply to Grassroots112]

He is not eating much the swollen tummy is definitely ascites it has gradually been increasing over 12 months or so

[Grassroots112 in reply to Bs1524]

Oh, that’s no good then, is he even getting this drained or taking any medication to help with it? I fear for your husband sadly

[Bs1524 in reply to Grassroots112]

They have increased his diuretics but he hasn’t been taking them properly

[Grassroots112 in reply to Bs1524]

I’m so sorry for you and indeed himself it’s at this stage now which does seem bleak with no likely positive outcome unless he stops drinking immediately and starts to follow all medical advice and keeps up with any medication provided which you obviously don’t need me to tell you

[Bs1524 in reply to Grassroots112]

I know and yet he seems so well I can’t understand how he is walking around

[Grassroots112 in reply to Bs1524]

It really does seem to affect everyone differently. He’s likely to end back up in hospital soon, where I hope he gets the medical treatment he needs, can be detoxed and comes out never touching a drop again. That’s his only hope right now, medical intervention.

[Bs1524 in reply to Grassroots112]

When they went to detox him first time they found he was addicted to alcohol so for him it isn’t physical but mental

[Grassroots112 in reply to Bs1524]

Hi, it’s likely both, he’s going to be physically addicted to alcohol too in that his body needs it. I was both and even if you don’t have any physical withdrawals after not having a drink for a few hours or even a few days, it’s what alcohol does to your body and how it makes your body feel that makes your body require it again and again.

Mentally he is unable to let go it seems nor wants to, he’s perhaps using it as a crutch for something, but addiction doesn’t always mean someone is masking over some internal mental struggle emotionally and mentally with alcohol.

If you have an addictive personality, the brain is wired in a way that when a person with an addictive personality likes something, they tend to like that something a lot such as drinking lots of alcohol, or eating lots of junk food, taking drugs or over exercising. This can be found in behavioural traits too, and is why we repeat certain behaviours over and over again.

I mean I really loved the taste of whiskey, I could easily drink it every day all of the time like I’d drink water for example if I could, even today, because I love the taste and then you associate it with other things like how it made me more sociable, how it made me sleep better, how my all over body itch which I’ve had way back since when I was a kid would disappear after a few whiskies (ironically since I stopped drinking, it has totally disappeared). Then the behavioural traits kick in like needing to have that glass to hand to mouth always, like picking out a fine bottle of whiskey off a shop shelf. Like it’s whiskey time at say 5.00pm or on the weekends.

I never really liked the taste of larger or beer so I could take or leave that despite being medically certified as an ‘alcoholic’ or a functioning one. I could never ever drink cans of larger in the house for example, but drank whiskey at home and often alone because it was my drink, it was my thing, it was my whiskey time.

Eventually again, you become totally dependant on it which is what has happened to your partner, likely both mentally and physically. Once I was treated for my physical dependency which could only happen in a hospital under medical supervision knew I had it in me to work on my mental dependency which eased over time because those my whiskey time behavioural traits were no longer a thing.

I wasn’t looking down the whiskey isle at supermarkets anymore, I wasn’t putting hand to glass, glass to mouth full of whiskey daily, I wasn’t using whiskey to get to sleep on the evening, or to be sociable, to stop that itch at night. My whiskey time no longer existed. Replaced with other things.

Now my behavioural traits are the opposite in that I don’t have any that involves alcohol at all and so it’s now almost kind of easy for me to now not drink. I still get the odd urge and I will always have to battle against it because it’s all around me, but I’ve broken all those chains if you like that had me shackled to the bottle, physically, mentally and behaviourally.

For your partner if he’s still hanging out with friends or people who drink around him, visiting the off licence, visiting the pub, looking at the alcohol isle, putting drink to hand, drink to mouth, it’s going to be extremely tough for him to break free of his addiction even with a life threatening illness that if he keeps drinking, he’ll die from and sooner rather than later. It’s awful for both you and him, alcohol is awful full stop when it has such a grip on someone where they cannot live without it literally.

[Bs1524 in reply to Grassroots112]

You have so well and come so far. You also have wonderful insight into your habits he appears to have known thinks all his symptoms was down to nausea meds and now all his illness has all gone . He also seems to think it was wine that made him ill but other drinks are ok when I told no it’s alcohol in any form he just ignored me. It is like watching a very slow moving car crash but we have his Dad living with us now and I am caring for him not sure if I can manage two if it comes to it. When his liver fails will it be a gradual thing or could it just go?

[Grassroots112 in reply to Bs1524]

Thank you and I’ve been lucky as all I really had to give up was whiskey. Your partner is sadly obviously still in denial and delusional if thinking wine will be OK. Again my drink was mainly only whiskey and while I do miss the occasional red wine with a meal and did consider I could get away with one or two here and there, I know only full well I can never drink again.

I’m confident I wouldn’t become dependant on say wine or lager or beer like I did with whiskey if I happened to have one or two today because I could take it or leave it, but I couldn’t with whiskey and know if I had a few say tonight, I couldn’t stop myself having more and more.

What stops me drinking again full stop is I now know how damaging alcohol is to the liver, even a healthy one and I don’t ever want to put mine in danger again, nor my wife and kids through seeing me killing myself.

Your partner needs to also understand that should he ever require a liver transplant to save his life they will take into consideration his drinking habits post diagnosis and should he require one immediately which could be the case if he’s still drinking with cirrhosis, they will probably refuse him one rightly or wrongly.

As for his liver failing, it’s already failing and him drinking is like throwing petrol onto a huge open fire. I’m no doctor of course so can’t say, it could be weeks, months or years, but it wont be pleasant and if he has varices, drinking will only make that worse and any ascites he has. He’s basically a ticking time bomb waiting to go off.

Please don’t take this the wrong way, and I hate to have to say this, but you are looking after his father which he should be helping to do with you, while he’s still drinking and is going to have to need you to also look after him, that’s highly selfish and plain wrong. You’re a saint full of care and empathy for what you’re doing you really are and this is just unfair on you and I just hope for your sake never mind your partner’s he can find a way to quit forever and save his own life. You take real good care of yourself in the meantime.

[Bs1524 in reply to Grassroots112]

Thank for your kind words. My husband thought wine made him ill so it was ok to drink something else. I don’t say anything anymore because the fall out is awful

[Lantana100]

I can’t provide any advice but just wanted to let you know I feel so sorry for you going through this. It must be exhausting and heartbreaking. I wish you strength going forward.

[Ubwa]

It is possible to have a blood panel that looks like you should be staring at a near corpse yet see a seemingly normal person. The issue is that when issues start to appear, they can hit hard and take no prisoners. I'm sorry you are going through it. Hopefully, he can turn himself around.