Liver Disease

[Uxori]

Hi there - I have just joined this group - my husband has cirrhosis of the liver - alcohol related - his recent visit to see his liver consultant was grim - basically if he continues to drink we have been told death is imminent - He still continues to drink but last week actually joined AA - until he stops drinking things will not improve but should he succeed in giving it up - I was wondering if there is anyone on here that has been so close to death that you have managed to turn it around. I am hoping it is possible. Thank you.

[Aotea2012]

Yes it’s possible. I was drinking ridiculous amounts looking back. It had crept up on me and got out of control. I ended up in hospital seriously unwell with a deep rooted infection which had tipped my liver into acute on chronic liver failure. I nearly died. I had no idea how much damage I was doing to my health and once diagnosed with liver disease stopped drinking. That was 2.5 years ago and I can confirm that I feel better than I have for years. I have cirrhosis…the damage I did is not fully reversible, but my bloods are normal, the two small varices I did have are gone, I take no medication and whilst there is scarring on the liver it is stable. My consultant tells me to keep doing what I’m doing and there’s every chance that I will die with it rather than from it and will still be seeing him decades from now for my routine 6 monthly health checks.

[Rshc]

Hi I am sorry you are going through this, I have been there. My partner was admitted to hospital with ARLD on the 23rd Dec 21 and I was told he had end stage liver disease on Xmas day. He remained in hospital for 3 weeks and immediately stopped drinking and hasn’t drunk since. Since then he has gone from decompensated and on the transplant list to recompensated with good liver function and removed from the transplant list because his bloods are near normal. Whilst obviously the cirrhosis remains he is generally so much better than he was 2 years ago

Giving up drink is really the only thing he can do, there is no possibility of any type of recovery without it and should the worst happen and he need a transplant that will not be considered if he hasn’t managed to give up drink

[J4ck1369]

Hi

Like Aotea2012, it also creptbup on me. I never considered I had a drink problem as I was still functioning well and had a professional job. I became very ill and was hospitalised for 6 weeks in May 2021 and was not expected to come outbof hospital. My billirubin (supposed to be around 12) was, at one point 822 (not a typo!). My organs began to shut down. Obviously I could not drink in hospital abd have nit toucged a drop since and never will. I lost all muscle mass, i was yellow with a a large belly. I was in a very poor way. Since leaving hospital i have turned my life slowly round and now feel better than i have for years. My fibroscore is F0-F1, i have no ascites and i go to the gym to do light weights and run orpower walk about 5 miles a week. I eat a good diet and my muscle mass is now ok again. It have a 6 monthly ultrasound & bloods but am on no nedication. Its not always been easy but i really should definitely not be alive but here I am. So YES it can be done but the main thing is to give up alcohol 👍

[J4ck1369 in reply to J4ck1369]

Sorry i meant to say hospitalised in May 22 not 21

[Oldbits]

Hi, hubbie similar but also has AIH. He stopped drinking (eventually) He also was told 18 months to live if you carry on and at the time that didnt stop him. It's a decision they have to make for themselves. It's hard to watch as the partner knowing what's going on. The AA are not for everyone and there are other groups out there if he doest get on with them. Your GP will know of others. We became an alcohol free household (I gave up to support him) and he has turned his life around, he gave up 21 months ago. It is possible to get better and live a near normal life but he has to stop drinking, eat healthy and exercise. He will struggle and there will be good and bad days. Look after you too, it may be a bumpy ride. Xx

[Uxori]

Wow thank you all so much for replying - I cannot tell you how this makes me feel - it is amazing that you have all turned your lives around after being at such dangerous points.

My husband is still drinking - he is trying to cut down and has joined AA. Sadly he has mental health issues which I think he medicates with alcohol - he is triggered a lot and his go to crutch is alcohol so whilst he knows the prognosis actually giving up is very hard for him. I think he thought he was invincible and is now very scared. I get incredibly anxious when I watch him drink, the click of a can opening has an awful effect on me, he goes to the pub and I fear him falling - many times he has fallen and been knocked down by cars - I could write a book - he has banged his head so much he has detached both his retinas, woke up blind one morning - oh it is endless - his sight is back - the bruises the falls the bumps the stress, the shouting, blaming me for his drinking - affecting the children big time - the smell - but he is a good man and I love him - I get angry and shout because I am frightened - I hate the person it has made me - and still he drinks. He has been detoxed - I tried to get him sectioned - they told me they don't section alcoholics - I have tried for respite - they don't take alcoholics.

He has recently had bowel cancer and has had to have a stoma fitted, this was in 2021 so another major trigger for him which is understandable, he copes with alcohol.

I am going to read him your replies as there is so much good in there that you have turned your lives around - hopefully it will show him that things can change and improve for the better. Thank you.

[Rshc in reply to Uxori]

God I totally know what you mean about the sound of a can opening. I get that even now when my partner opens a lemonade.

My partner used drink to cope with anxiety, no one sets out to give themselves cirrhosis, there is often an underlying reason for drinking to excess.

Actually giving up drink has helped my partners mental health.

[Babygirl101 in reply to Uxori]

Hi there

Just reading through your post and I’m sorry you’re both going through this. Are you in contact with local alcohol services?

I had to go into a detox facility and immediately into rehab to get sober, but you will need to engage with services to access funding for this, if you’re unable to go private. My health had deteriorated significantly and I was told that I had to stop drinking or I’d die.

It’s incredibly difficult to make that decision, but for both of you, it may be an option to consider. Your husband would get the intensive treatment he needs and you would have peace of mind knowing that he’s in a safe place. Too often, the families of those suffering are forgotten in this process.

I’m 20 months sober now and happier and healthier for it. Put on some weight, but that’s to be expected 😊 I came far too close to losing my life to ever want to have another drink, but it can’t be done alone, in my opinion. You both need support through this and you have the opportunity to connect with a great group of new and like minded friends if you engage with services. Connection is the opposite of addiction x

[Oldbits]

Hi again, my husbands drinking was caused by anxiety, made worse by knowing he was ill. His go to was vodka when he was stressed. I can relate to the screaming etc.. (my poor neighbours) it's because we love them and dont want to lose them. It's not your fault, it's the alcohol changing his personality. Hubbie got councelling and medication for his anxiety and this helped so much with the abstinence. I wish you luck and feel your pain. Hugs xx

[Superbly]

Hi Uxori please tell him to stop drinking now my story I am 64 years old I had a liver transplant because my liver was in a very bad way I was at death door I don’t drink at all I had confused has set in this is all before my transplant if I drank any any drinks they would not do the transplant the confusion started in February 21 and in March 21 April 21 my transplant team was very worried about it and they told me on the 5th July 21 I was on the transplant list I was very happy they told me about the phone calls for the transplant and how it works I got my phone call at about 3.30pm on 15 July 21 saying get ready you are going to have it done ok I said got to the hospital and by 10.30 am I had my transplant now two years later I am 100 prescent better and I go back to the hospital in January 2024. So please stop drinking the devils juice. I am sending you all my best wishes and luck

[Richard-Allen]

Hello Uxori

It has to be said, that the AA approach isn’t everyone’s cup of tea. I personally don’t like it, as there is a tendency to stigmatise someone. It’s a label that doesn’t sit well with everyone. “You’re an Alcoholic and if you don’t admit to being one, you’re in denial”. So, you’ll never see me use the word “Alcoholic” or label.

It has to be remembered, that 82% of people who go on to develop a serious liver condition through alcohol abuse are not actually addicted. They certainly have an alcohol problem, but are drinking because they choose to, not because they have to.

This isn’t to say that AA is all bad, many people have found its services useful, and anything that helps a person stop drinking alcohol can’t be all that bad. But it’s not for everyone.

Many local councils have a “Drug and Alcohol Support Group”, but these tend to be run similarly to the AA setup, and treat everyone as having an addiction problem.

When a person ends up having a serious, life-threatening liver condition. It needs to be treated as being their “wake-up” call. The severity of the condition really needs to be sold to them.

Those who go on to develop alcohol-related liver disease (ArLD) now have two things going on. Firstly there is the liver damage, and secondly, there is the mental health condition. This could be in the form of an addiction or an underlying unprocessed traumatic experience.

Many people seek solace in alcohol as a form of coping mechanism. The actual reason as to why a person drinks, may have become lost over time. This is always a thorny subject to try and talk about, as they are often seen as being a form of criticism, and blame.

Sadly with alcohol, it becomes so ingrained in our lives that it becomes hard to imagine a life without it. That resolve and determination to stop drinking will be tested time and time again.

If a person is to give up drinking, they first need to want to. It has to be their choice, emotional blackmail won’t work, and nagging won't work. Hiding their booze won’t work. It has to be their decision.

Secondly, they need to address that often hidden memory or traumatic experience. This needs to be processed before the person can find that inner peace. It’s a bit like, “cause and effect”. Treat the cause, and the effect becomes redundant.

Once your husband has decided that he wants to live, then some basic, but supportive home truths have to be made, simply sit down, and put it bluntly. “Right, this is what’s broken, now what are WE going to do to make it right?” this will show him that he’s not alone and that you are going to be there and in is for the long haul. He will need your strength, and it will give him something to build that willpower on.

Sadly, not everyone hears that wake-up call. They just can’t imagine a world without alcohol. It’s a long road, but many of us have been down it, and have reached the other end.

Have faith. Tomorrow needs to be the first day of the rest of his life.

Always feel free to send me a private message if you’d prefer, I’ll always try and help if I can.

Best Wishes

Richard

[Babygirl101 in reply to Richard-Allen]

I agree with every word of your post! 12 Step is often seen as the be all and end all, but it’s not for everyone. I personally tried AA; hated it! Went to NA instead, but I still didn’t like it. I don’t necessarily agree with some of their principles, but it works well for some.

I personally prefer a more therapeutic/psychosocial approach, understanding why the brain works the way it does and learning how to ‘rewire the brain’ to find new ways to ‘reward’ yourself, rather than ‘celebrating a win’ with a drink or ‘drowning your sorrows’… with a drink!

I went to a therapeutic rehab, which had a heavy focus on stress management, self awareness and addressing trauma and found this approach very helpful. SMART Recovery seems to be the better approach personally, but unfortunately there are no face to face groups in my area. They’re all online and I would prefer face to face. Hey, ho. I’m 20 months sober, so something works.

[Greengal314 in reply to Richard-Allen]

Thank you Richard-Allen for the very well thought-out synopsis.

Have a great rest of the week!

[Dryfly]

Hi Uxori. I'm an alcoholic (now in 'proper' recovery). I joined the AA 13 years ago and I'd have very good periods of abstinence (often several years) but I kept relapsing. Around five years ago, I was diagnosed with Cirrhosis, right after which I took a resentment at my consultant and drank for 3 months. Then I got sober, then relapse, and the pattern continued. After a serious relapse in March 2021, I went into treatment for 3 months. I hated every day of it, but when I decide to do something, I'm all-in. I stuck it out. When I LEFT I was filled with emotion. I had a lot of rage and social anxiety, a lot of confusion and I was also having to deal with my family's justified anger at me. It is fair to say that my last relapse caused my marriage to tip into failure irrevocably (it had been a long, hard process, and my wife had long-since put up with way too much deplorable behaviour, if I'm being honest).

I grabbed at every possible lifeline that I could find. In Scotland: AA, SMART meetings (non-12 step), Change-Grow-Live, local mental health therapy, Access to Industry. I also engaged with the Edinburgh recovery community, many of whom I would never have been seen dead with before, but who are in essence are just like me. I do something to actively progress my recovery every day, often without any direct association with "addiction". We go fishing, we have a great creative writing group (of diverse abilities), there are walking groups, book groups, mindfulness activities, driving and boating qualifications, college (I'm doing film-making at the moment), outdoor pursuit adventure groups; there's theatre (both sides of the curtain, including one group who annually have a production on at the Edinburgh Fringe) - these are just some of the things, and ALL made freely available to those of us in addiction recovery, funded through various revenue streams, both public and 3rd sector.

After a few weeks out-of-treatment, my mind settled, and I was able to think clearly. Now I'm two and a half years sober. My life has become enriched in a way such as it has never been before. My UKELD score however continues to degrade and when I had a meeting with my consultant yesterday it had risen to 52 and the very first mention of transplant cropped up. I'm aware of my mortality factor, but not overly afraid of it.

During summer last year, I had a brief nostalgic notion of having a beer when I was passing a beer-garden. The 'nobody will know' thought quickly jumped into my head. I took a wee note out from my wallet which has the three worst consequences of my drinking written on it and any romantic notion disappeared. That's the only time I've brought that note out, but it is with me all the time. Every day my recovery from my addiction becomes stronger and stronger. I can now be around people drinking and have absolutely no resentment that I cannot drink, mainly because I don't want to (that's massive, and a shift-change from my previous bouts of sobriety).

I no longer promise to myself that I'll never drink again; all I can say is that yesterday I achieved the goal of not drinking, and for the next twenty-four hours, I have no intention to do otherwise. And I regularly check that intention.

If your husband continues to drink, he will die, and although he honestly doesn't think so, it will be on him before he can do anything about it. But neither you nor anyone else can make him stop. I wish that I had a magic wand I could wave or that I could summon a 'Ghost of Christmas Future' that could show just how amazingly fulfilling life could be for your husband, but sadly, when I was in active addiction, I'd have just waved these away.

I know that this has been long-winded, but I hope that you or someone else can take hope from learning a wee bit about my journey.

If he chooses to continue to drink, all you can do is (sadly) support his decision, but whatever you do, make sure that you live your life to the full, whatever that takes.

Best wishes.

[Dryfly in reply to Dryfly]

I should add that my consultant advised that I had satisfied the criteria for transplant eligibility of being abstinent for more than 6 months. I don't know if this test (or similar) applies where you live, but suspect it will.

[Uxori]

Thank you for all your replies - I have read them to my husband and he seems really interested in them - a lot of hope in there for him and for me, a lot of honesty too. Thank you, I cannot express how much I appreciate the time you have taken to reply and your support.

Kindest regards

[lonmallin50]

yes i did i packed in 2 half years ago woke up yellow eyes went into hospital for a couple of weeks ,it all cleared up bank on it drink for about 4months went yellow again wish I knew what i know now the yellow never went away after a year off the drink still yellow then that's when they said I need a transplant to survive, many more months off worry weather i make it or not finally got on transplant list in may this year more months off worry weather your going to get a phone call or not then last week got a call on Wednesday day morning had op Thursday morning today is Wednesday evening going home tomorrow all done in 7 days

but if i would have stopped when they told me i would not to have to go what i went through i just thought a new better i strating drinking when i was 12 years old collecting glassess in the local club all the way till when i was 47 owned my pub at 25 so i around it 24/7 working drinking all went hand in hand i worked 7 days a week in my pub drinking everyday its took it toll eventually have to finish ill health when o look back at what i was drinking 1pint a hour would be 18 pints a day a i certainty done more than that most days if i can quit any one can there more 2 life than drinking the damage it does is frightening i had HE with mine as well where it affects your brain function as well i 50 years old now new got a new lease of life for many more years to come thank you to a old woman in her 70 years plus died of bleeding on the brain to be my donor hope this helps you stay off it good luck Lon

[2022minks]

Can you get some one to one counselling, I know this helped my brother in coming to terms with coming off alcohol, its a habit that can be hard to kick but stopping can help reverse or stop his liver from failing. Every sip is like poison to his liver.

My mum had cirrhosis from prescribed medication, she had no reversal option and no lifeline of a transplant. Liver Failure is a cruel disease that effects body and mind and sucks the life from them.

I hope the posts from those above who have made a real difference once they stopped alcohol will help him to see some hope if he can stop, unfortunately many of us get to witness the death of our loved ones way too soon. Sending you both much love and support x

[Cb1963]

Hi Uxori, sorry to hear your husband is having so many problems with the demon drink, and of course you and the rest of your family will feel all the fallout from this terrible affliction. Everyone has different stories and different solutions, my reply might be long winded but it's important to try and gain as much information as possible, firstly on here you'll get plenty of support, and you have to try and pick out all the things that may help you move forward to getting you and your husband to a better place, you mentioned your husband has underlying mental health issues, have these been addressed, I only mention this because I ended up becoming an alcoholic after suffering with ptsd and at the beginning I was a "working alcoholic " which progressed into a chronic alcoholic.

These deep rooted problems caused me years of hidden drinking, but ultimately caused my life to spiral into chaos, I tried the AA option, but because I had a couple of traumatic incidents I didn't want to reveal my whole life story to people I didn't even know, I needed one to one counselling, I had numerous problems health wise, never took interest with what the doctors said, had a few stays in hospital, even a detox, and ashamed to say while waiting for my discharge medication i went to the nearest pub , even lived in a drinkers hostel, lost touch with my family, but fast forward I'm now coming upto being 12 years sober, back in touch with my family

Drinking brinks out the very worst in people, you can look at them and probably hate them and think why are you putting me and the children through this, unfortunately there's no logic in an alcoholics mind, it goes through different emotions, maybe a bit of anger, sadness, relief of getting another drink, l didn't really pay any attention to what the specialist's said to me at the time, I had no one in my life, everything was a haze, and I can't give you the solid advice about the time limit on a life span, but, all I know is, and that's a big step, it's down to your husband to fight this battle, get as many people on your side, but only you know your husband if you push him to hard it might make him feel like he's getting shoved around, maybe baby steps is the way forward, but like I said you know your husband best, I really hope you get the right support, it won't be easy, but there's loads of good people on here who have conquered this awful condition,.take care Chris

[Dogbot]

Hi Uxori a lot of people on this site know about my drinking but a quick summary is, in 2003 I was taking into hospital and the doctor came back in the morning to say I didn’t think you would still be alive. So now we start the hard work and omg have the doctors and nurses done their job. I’m now 20 years sober with a 6 month post liver transplant having managed to see and enjoy three of my own grandchildren and two foster grandchildren. Without mentioning my wonderful supportive wife that we now have a wonderful life together. Good luck to you both and our best wishes and thoughts are with you both 💕💕👍👍.

Stay safe All

Dogbot 🐶🌈Dave

[RugbyMama]

My husband had been drinking heavily for 15 years but last year, following the death of his father (which was fairly traumatic due to some significant family issues), his drinking got a lot worse. In December 2022 he stopped drinking following sudden onset of pain, lots of tests followed. He has compensated cirrhosis but it has been made very clear if he wants to remain healthy and well and be around for as long as possible he must remain abstinent for life. Death from liver disease is slow and painful at the end, and there is still so much stigma about "drinking yourself to death".

Has it been easy for mt husband? No. Is every day a challenge? Yes. Has he wanted to drink? Yes. One day at a time. For both of us. Forums like this are a godsend. You cannot force him, but you can be there for him

[Iau1]

I am sorry to hear about your husband. There IS hope if he stops drinking. I nearly kicked the bucket some 2 weeks ago as was unable to eat and keep food down and became so weak until they eventually started feeding me by tube directly (through my nose) to my stomach. I thankfully came round and am now looking at the options ahead.

I was disgnosed with cirrhosis some 8 weeks ago and I am still hopitalised. It came as a bit of a shock to me as there were no symptoms until it was too bloody late.

I'm doubtful whether my liver will regenerate and will probably need a liver transplant. However, this option is ONLY available to those who abstain for a sustained period (no duration was mentioned , but I believe that there needs to be a good prospect of not sucumming to the 'lunatic broth' again in future).

Remain positive and I hope that your husbsnd succeeds in abstaining. There IS hope.

Incidently, the waiting list for a liver transplant is only about 65 days, but the time is taken pre-opp, getting the patient off the booze and well enough to sustain an 8 - 9 hour operation.

Good luck and stay positive!!!

The drinking culture in this country should be addressed urgently, but there is no prospect of that whilst the government derives £millions in tax revenues annually. They did it with cigarettes, so why not sort our booze? Shame our politicians are crooked and unscrupulous!

[Iau1]

So sorry to hear about your husband. It's a difficult one.

I am 8 weeks in from diagnosis of cirrhosis and still in hospital. I was a big drinker, but this has given me a wake up call and so , given that I want a fighting chance of survival, I have quit the demon drink for good.

I would ignore my better half's (health) warnings about my heavy drinking. I used to spend about £600 per montb on booze, just to mske me ill - madness!!!!

Why on earth doesn't the government step in and ban alcohol advertising and remove displays in shops and supermarkets. Could it be I wonder because they derive millions of £££ annually in taxes from the sale of the stuff?

Finally, I very much hope that your husbsnd sticks with AA - I understand that it's very supportive and can, in some cases, allow partners to sit in on meetings.