I don't know what to do

[Hithereeveryone]

Hello everyone, my partner has been drinking for 8years. He was diagnosed with decompensated liver cirrhosis, he is showing signs of HE, has swollen ankles and tummy, forgets things, and now recently has a 'rash' over his legs, he has cut down alcohol consumption but is struggling with the last push, we have asked everywhere we can think of for help and no one seem to want to. We have had points over the past year where he can hardly walk. The specialist doesnt really say much either, does anyone know what this rash is?

[bagpuss7]

Hi. Are you seeing a hepatologist? I don't intend to scare you but if he is still drinking, and in the stage of liver failure you describe, he has to stop. Total abstinence. I was told to not even put a dash of wine in a dessert or pasta sauce. If he is having all these symptoms, I am sorry to say he is in danger if he doesn't stop. Real life and death stuff. ( sorry to say this) The doctors will not consider a transplant which can become the only option unless he has had a period of abstinence. Ring one of the nurses on the helpline on this site. I am sorry to be heavy but you rightly deduce that you need urgent help.

[lonmallin50]

Hi i was a heavy drinker for years since a kid i was took to hospital decompensated liver, yellow eyes, i did not listen the first time they told me to stop i cut down a little when yellow was gone and felt a bit better i went back to normal drinking 15 pints a day over the day and night bottle of wine with dinner then after a few months it all come back the yellow i was like bart simson rushed into A E they did not think i survive they told my wife in for 2 weeks back home my mind was a bit clearer started reading peoples story's on here about there alcohol addictions how much there is two lose if i kept going on drinking and leaving all your family behind it made me realise what i was doing to my self that was 3 years ago never touched a drop since but if i would have listened to the doctor after first time in hospital and stopped i would not had two go through 2 half years off suffering my yellow never went in my body all that time i was bloated from the fluid build up feet legs stomach all over really sleepless nights could never get comfortable breathing problem's from fluid in side me could hardly walk some days shoes did not fit had to ware flip flops could not get dressed my self it was a terrible life for them 2 half years not worth living really then i got a chance of transplant jumped at it had the assessment got my T P 5 months later i was that ill on 19 oct last year now being drink free new liver i feel amazing now but what a tough 3 years it was would not wish it on any one if you cut down the drink already do the last bit and listen to the doctors i wish i would off first time there more to life than drink you feel loads better off it and save your self the trouble of all the stress and endless hospital visits it can be done. it can be done i was drinking at 11 when i was collecting glasses then had my own pub from young drinking morning noon and night for 21 years i had it until it nearly killed me. good luck

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Hithereeveryone

If you 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)

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including our alcohol-related group this week.

If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[RugbyMama]

So sorry to hear your story.

Cutting down is not enough. Your liver has 500 functions within the body. While it is the most forgiving of all the organs, Every time he drinks he is putting a stress on his liver which means it can't perform other functions. This is why he has itching, HE, ascites; because his liver cannot perform some of its other functions.

If he has decompensated cirrhosis, he's heading towards requiring a transplant. To be a candidate for transplant he needs to be completely sober for 12 months and be able to prove it through testing. Unfortunately in my experience, there is little that can be done to stop other than the big wake up call. Have you tried al-anon or another alcoholics charity?

[Shep666]

Hey

First off well done to him for taking the 1st steps and cutting down.

i had all the same symptons and really bad rashes on my lower legs . All liver related and fluid retention. The easiest way i saw it was the skin is damaged and "stretched" and becomes itchy and prone to infections. i was given a lotion and used it a lot - never went but stopped a lot of "scratching".

Its true he needs to stop alcohol all together - and no transplant will be done/thought of unless he commits to that. There isnt a hard and fast rule on how long you need to be "clean". I was 3 months sober when they listed me. It is however very important that he commits and has a demonstrated good support to help him through the tough times. They will test as soon as he starts and to continue to do so. Not sure which hospital you are attending but all the liver centers do have alcohol people who can help. If you let me know maybe i can give you a pointer? Not sure what stage you are at - regular appointments or a consultant?

I have come through the other side and it is life changing - maybe he needs to talk to someone that has been through something like me - as the other posters say - he has to make the change for this to work.

Good luck in your journey - cutting down sint enough but its a step forward.

[Porcupine_Tree]

Bleeding from small blood vessels. Stop drinking and speak with BLT nurses. They tend to have more knowledge on liver disease thanbthe GP

Good luck

[Hithereeveryone]

Thankyou for all your comments, it is very difficult, he has other mental health issues which makes it difficult and has been told to come off it slowly, but we cannot get help with the last 'push' which is where he is struggling, he is with CGL which has been a bit helpful, he is with a hepatology consultant who we see every 3 months, has anyone got any tips on how to come off the last bit of alcohol? I thought it might be bleeding from the blood vessels, he also gets very painful legs but struggles to sit down due to anxiety. I have emailed his consultant and asked if there is anything we can do to help with the pain but no reply, he doesn't seem to be on the meds that I have read about on here?

[Guppy26 in reply to Hithereeveryone]

Could you get him admitted for detox? I had my mum admitted for that. She came out and drank again unfortunately but they can give meds to help and then could he get a referral to residential rehab? They do exist on the NHS. I really feel for you. Best of luck x

[Hithereeveryone in reply to Guppy26]

We have been trying to get a Detox or Rehab but cgl are not very helpful with that and I don't know where else to go or look.

[Guppy26 in reply to Hithereeveryone]

I've not heard of CGL but can you try via NHS? If there is a danger to his health by suddenly stopping they should be able to offer detox they meds.

[Hithereeveryone in reply to Guppy26]

Thankyou I will look into it

[Pete728]

Hi, I totally agree..the only way is to pack it up, till then, there's no point really posting messages on here as there's nothing people can say that will slightly change a thing. The groups like cgl can work for some people but if you really want to quit, it's all down to you at the end of the day. It made me 100% worse sat round a bunch of alcoholics every week for me so got booked into a rehab centre for a fortnight where they can get you off it through professional supervision. It is hard getting anything out of your doctor/ consultant. Just need to keep on them everyday till they start doing stuff, maybe the truth is that they would rather help people who are willing to help themselves?

[Oldbits]

It's so hard caring for someone with decompensated liver and alcohol. You have done all you can, hubbie used CGL but also a private therapist/psychologist to help him with anxiety over his illness (Other issues aswell as alcohol) He did councelling over the phone. CGL also organised acupuncture to help with the anxiety associated with stopping. He stopped completely and has never looked back. Sadly they have to choose to stop themselves for that last bit there is no magical way to help. Until he does stop damaging himself you will find people are reluctant to help. But when he does stop he will start to feel the benefits and probably feels some now having cut down. It is an addiction and understanding why they started to drink could help them stop.