Hello everyoneMy other half was diagnosed with advanced decompensated liver cirrhosis earlier this month.
He's in denial at the moment so I'm trying to learn about what will happen to him, what support there is available.
He's not interested in visiting the doctor- he won't leave the house.
I'm trying to help him the best I can
Any advice would be wonderful
Lou
Dear Stephsmumlou
Here are the links to information about cirrhosis on our website, which you may find useful
britishlivertrust.org.uk/in... (including a suite of publications towards the bottom that are downloadable or can be posted)
britishlivertrust.org.uk/in...
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 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
What is the cause? If it’s alcohol has he stopped drinking? This will be the single most important determinant of outcome and how his disease progresses. If he has stopped then coupled with a good diet and exercise his condition could improve significantly.
Alcohol was the cause, many many years of drinking vodka. He's not drank since being admitted to hospital
As long as he remains abstinent then the outcome is certainly improved. There was research done by the University of Southampton some years ago which shows that abstinence was the most important indicator of survival rates of even the most severe cases of cirrhosis. With life expectancy doubling if alcohol was removed from the equation. The liver is a remarkable organ and by doing the right things with diet as well he stands the best chance of improving.
Hi,Thing is I'm not sure that he will. He's already spoken about not giving up drinking.
I’m sorry to read that. If he continues to drink then the outcome won’t be good. He won’t be considered for a transplant unless he’s been abstinent for at least 6 months and continuing to drink will certainly lead to a poor life expectancy. With help it’s not impossible for him to stop. There’s many on here, me included, who’ve successfully done so and seen huge improvements in their health. I had acute on chronic liver failure 20 months ago, I stopped drinking immediately and haven’t touched a drop since. I had ascites, jaundice, muscle wastage and bloods off the scale. I’m now healthy, run a couple of miles a day, eat properly and work. My bloods are normal and I take no medication. You’d have no idea I’d been so ill. I’m not alone....there are lots of similar stories from members of the forum. So I guess he has a choice - continue drinking and have an expedited death or stop drinking and continue to live. There isn’t much in between I’m afraid. There are some fantastic alcohol support services he can access that will provide him with help. I had intensive input from Turning Point for a couple of months. They were great. Hope he’ll take up the support because his life, even at this stage, could improve dramatically if he stops.
I'm so glad your health has improved.I think my partner has given up, he's just laying on the sofa feeling sorry for himself and finding fault with whatever I do.
I’m so sorry my cousin didn’t stop drinking and she died at 33 it was sad she had so much depression at the end she said and she couldn’t shake the depression and lack of motivation she was saying and it was so sad being so young and I miss her it only been 4 weeks and I miss her every single minute
Hi LouFirstly you're I'm the right place, there are lots of very welcoming and knowledgeable people here who all know what you're going through. I only joined recently and I've learnt loads.
Like you my hubby has ARLD and was told this week he won't see Christmas if he continues to drink. Guess what - he still is, although less.
If the ascites is painful and large enough to be drained then a stay in hospital might be needed? They would detox too and that might be a starting point.
It is so tough watching it from the outside, look after yourself too.
Louisa xx
Hi Louisa,He's already been in hospital once, he discharged himself after a week because he was bored.
I am so sorry to hear what you're going through, it is so hard. Ultimately no one can make anyone else do anything. Practically, I'm now a carer. Hubby is very light headed so even walking round the house means I need to watch and offer a hand. We have stairs so I dread him going up and down (he's fallen several times recently). There's incontinence (both) so lots of washing. If he falls he bruises and cuts his weak skin so get lots of dressings / plasters. Itchiness is another, constant scratching, GP prescribed cream which he won't use. Eating is a battle, but maybe you're luckier. Low salt diet essential. I prepare things and if I'm lucky he has one mouthful. The fortified drinks are full of nutrients but mine won't touch them.
GP told me to expect a gradual deterioration but watch out for bleeding and any spike in confusion.
Good luck Lou xx
Thank you my lovely.We've had the incontinence already (we have the mens nappy things)
He's drinking milkshakes so he's getting some nutrients.
He gets light headed too and has fallen. I've already got bandages and plasters in.
I feel like a carer too
Big hugs x
Hang on in there, you're doing so well. I've just taken delivery of a walking frame and commode.... that's when it hits home x
I'm doing my best x
keep reading this forum it’s a breath of fresh air to hear and talk to people in similar circumstances to yourself, as well as the general advice you get from the professionals. All the best.
Unfortunately not everyone recovers from giving up alcohol.My wonderful husband stopped drinking as soon as he was told he had decompensated liver disease but he also had HE and ascites. Doctors said he probably had12 to 18months. He went to hospital for regular drains but his appetite never really improved and he continued muscle waste.He wasn't keen on the Ensure drinks either!
His itchy skin became like paper and bruised easily.
He took lactulose for the HE but also needed daily enemas.
This all wore him down and he became so weak he could hardly move.
Because he had throat cancer previously which was cured with radiotherapy he could not be put on the transplant list. Apparently you need to be 5 years clear.
He tried hard to stay and kept saying i know its my own fault but his body eventually gave up and he died 6 months later.
I miss him terribly and sometimes wonder if it would have been better if he carried on drinking to avoid all the heartache and distress he suffered.
I hope your husband improves, as many have on this site , and hopefully he will be considered for a transplant if he manages to give up the alcohol. Big hugs and try to take care of yourself too.
I'm sorry for your loss xBig hugs back x
You little beauty! What pain you went through, but you were always with him. Life is so hard sometimes and for the very dearest of people, gone astray. There but for fortune … Well done you all who care. Xxx
I got de compensated liver my main affect is only jardice at the minute has he stopped drinking if that what caused it if not time to stop they give you the 6 month marker after you stop drinking to see if your liver repairs it self in that time if not the transplant is the only other way to get better that's what I got to go through so if it is drink he needs to stop straight away he might be one of the lucky one and it will repair it's self good luck
Hi there,
My husband was admitted through A&e for a bleed, he also gave up alcohol, never had another drink, he was diagnosed with decompensated cirrhosis, he was assessed for transplant last November, sadly he was declined as he was too poorly, and had other underlying health issues.
I knew at that point we were living on borrowed time and the damage done was too extensive for his liver to recover, we saw his consultant back in May, who told us there was nothing more they could do, other than deal with his symptoms.
He tried so hard, and he firmly believed he was going to get better, but it sadly wasn’t to be, and he passed away 5 weeks ago, leaving us all devastated.
I hope your husband recovers, and can give up the alcohol, I really feel that there should be tighter restrictions around it, but that’s never going to happen.
Take care of you too, and ensure you have some “me” time x
I'm sorry for your loss x
I am very sorry to hear about your husband. Sending hugs to you and your family. X
he simply must give up alcohol completely, if he won’t accept that he needs to talk to someone who has been through it. Stubborn isn’t the word, but he is in denial and there are plenty on here who can help if he only gives it a try. I feel sorry for you, perhaps you need to give him some home truths and refuse to be his carer unless he changes.
the other thing worth mentioning is that if newly stopped drinking then that can have an impact on mood, my partner was grumpy and ungrateful whilst in hospital and undergoing detox for at least 3 weeks, he is very much a changed man now almost 11 months later. The next thing to say is that if at any point he wants to be considered for transplant (and he may not feel like that is something he wants right now but there may come a time when he considers it to be the most amazing gift of a new chance) he not only has to give up alcohol and that includes alcohol free beer and wine but he really needs to prove he is engaged in his own recovery.
I very much doubt he would be even considered for assessment if he is discharging himself from hospital and not attending appointments. That is a big part of being considered a suitable candidate - they firstly need to see that he is an active participant in his own recovery but also that post transplant he will be compliant with the many medications and appointments that will become part of his life.
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