Hi! Newbie needs help!!

I just joined this site, hoping for support and advice from other wives or partners of liver disease sufferers. My husband has had an intermittent drink problem for the last ten years or so... three years ago he tore his oesophagus through vomiting. It was repaired and he had no varices. Recently, during a binge, he started vomiting blood again. He had two varices banded and was admitted for several days while they got his blood levels, phosphates etc sorted. He's been home a week now, with a cirrhosis diagnosis and plenty of meds to take... I know he's very unwell but he seems to have his head in the sand. He says he'll never drink again because next time it could kill him, but I've heard it a million times before... he doesn't want the follow-up endoscopy the consultant requested... now he's saying he doesn't want to be on tablets the rest of his life... it's like living on a knife edge. He's so irritable and unreasonable. He shouted at the kids tonight - and I mean, really shouted. I don't know whether he'll become himself again as he recovers, or whether this will be on-going. I've been so strong for so many years, helping him, running our business when he's 'out of action', looking after our three beautiful boys; but now I feel like I might break. I don't know where to get the information and answers I need if he won't co-operate. Someone please tell me it'll bE alright.....

19 Replies

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  • Welcome to this site. I don't know if my advice is the best..but I'm sure you will find support on this site. Firstly please try and be kind to yourself. If you look after number one you have a better chance of all being alright. You have a lot on your plate. You didn't say how old the boys are, but they need you too! Your husband has a drink problem and he has to take some responsibility for his health...only he can do that. Being irritable and shouting is not nice, though it is most likely not intentional. When we feel like sh.....t we often behave the same way! Try not to take it personally. Trust in yourself to know what to do for the best..one day at a time.

    You will get more medical help from others!

  • Thanks for taking the time to reply. I feel a bit stronger today but it's reassuring to know that we're not the only ones in this situation. It just seems such a long time until the follow-up appointment.... but I'm sure we'll get there!!

  • Hi there,

    I'm a male, father of 4 and I suffered from a drink problem too. Everything exactly as you've described with your husband. I was in denial, my behaviour was appalling and particularly towards my long suffering family. So I've been there and done it.

    I ended up with cirrhosis and cancer of my liver and needed a transplant to survive.

    I didn't want to seek proper help and kept promising the same things, to not drink, but when they told me I had 9 months left to live and only a transplant could save me, I stopped there and then. I was a heavy drinker both socially and at home and couldn't picture my life without being able to have a drink. But after the first month or two it's actually not that bad. Most importantly I decided I didn't want to die at 42 and not see how my children grew up without me.

    However I'm here now, and when the illness is treated and post transplant everything is great. I'm no longer moody or aggressive, and back to normal except without alcohol and taking a few pills each day. Small price to pay to be alive.

    Good specialists will tell you that the behaviour your husband is exhibiting is the disease, not him. It has a big effect on you mentally, which reverses completely after transplant. So what you should take from this is that everything will be OK although it's really tough now (and has been for sometime). He clearly has cirrhosis and needs to get checked properly. The will power to stop drinking has to come from him, but try your best to remove him from places or situations that have alcohol involved. You will need to replace the alcohol with other things to keep him occupied. Boredom can be a big driver of drinking.

    Once he gets checked to see if his cirrhosis is too far gone and he needs a transplant, and subsequent treatment is started things will get better.

    I really wish you luck, and honestly it is a bad disease to have and it's hard to control but I promise everything will be OK in the end. Keep the faith 👍😊

  • Excellent post

  • Hi Camil8. Thanks for sharing your story with me. It helps to know that other people have gone through the same - or worse - and come out the other side :) can I just ask, how did you get to a point of knowing you had 9 months? And needed a transplant? What scans or biopsies had they done, or how bad were your symptoms for the doctor to make that estimation...? I appreciate you might might not want to share everything publicly, so that's ok if you prefer not to... thanks.

  • Not at all. I had been to two different hospitals and the first said I was sick and might get cirrhosis. Went to a different hospital because I knew myself that I must have cirrhosis, and they confirmed I had cirrhosis and liver cancer. But they were talking long term treatment and again I knew I was in worse shape than that, my wife could see it and was constantly telling me. Through my contacts I finally got into see the top specialist in the country, and one of the foremost in the world. My first visit within 3 mins of looking at me and checking my fingernails he said I have 9 months to live. No scans nor nothing, that all came after. He was right to within 48 hours when just as I was about to die a compatible, or as close as could be, liver became available.

    He spent a lot of time during those months explaining to my wife that my behaviour was as a result of the disease, that it is a disease and has big neurological effects which alter many things including mood, behaviour, etc.... That's why I suspect your husband is in a bad state. And I never had varices so there are somethings that don't necessarily mean you have cirrhosis. Jaundice is a definite indicator.

    What I learned, is that I wouldn't be here now writing this, nor my children have a father, if I sat and accepted what the first two hospitals said. Seek the best advice you can because you need a good liver specialist to diagnose exactly what's wrong. They still know relatively little about the liver compared to other organs.

    Once again I wish you luck RuthieD and know that once it's diagnosed and in proper care it can treated and all will be OK. For him and for you. He doesn't need to be scared by seeking help or the future, just get up and do it.

  • Thanks for your response. I'm sure your wife was pleased that you listened and persisted!! At the moment I think hubbie has his head in the sand a bit - it's 3months till our next consultant appointment and I'm hoping she can get through to him!! Fingers crossed!!

  • Once it's diagnosed and proper treatment starts you'll see a big difference in him. Trust me there is nobody more stubborn or difficult than me, but I did what I had to in order to stay alive and make sure my kids had a Dad. Being there for them is a Dad's most important role.

    Ask the consultant directly can they check for cirrhosis and liver cancer. It's just scans. If he's not jaundiced he may be lucky and have missed it or be in the very early stages of cirrhosis which is reversible.

    There's a lot of scary stuff on the internet about cirrhosis and it being incurable but don't worry. Just work the consultant hard. When he hears what he has and the consequences he'll be right. Even the toughest of his wake up quick when faced with mortality.

    Really wish you and your family the best RuthieD

  • Thanks for all your time and replies - it's been really helpful 😊 good luck to you

  • Also RuthieD you can try actualise as some have suggested, no harm. Don't sit around waiting for an appointment, where the liver is concerned they seem to make them months apart. Unless you have 100% had cirrhosis ruled out, get in there and keep banging the door down until you're satisfied. Although I don't dare diagnose, the symptoms you describe suggest your husband has cirrhosis but there are three stages and in some cases he might not need a transplant and save himself. But stopping drinking as hard as it is, is key.

  • hi camil8.can I just say thank you... I too was similar to yourself .I was given 6 months to live 9 yrs ago. my father was my rock my best friend and my world.. god bless him he was taken away from me 3 yrs ago to cancer . I am so happy to hear your doing so well and giving all of us here who are suffering some light at the end of this disease that's now starting to affect me physically. had my first ever meeting with my hepetologist 2 weeks ago. I was shocked to see how high my fibroscan score was. I think even my consultant was shocked as all i get told is now well i look which is very deceiving. giving up the booze was hard and I was sober until dad passed away. I went on a total 12 months plus non stop drinking. this gave me ascites yet again in 2014. so I have been on and off the wagon. I have not touched a drop now in a long time. I can't work due to the tiredness yet I have insomnia? and I have a hospital on 6 April at neurology due to the tingling in my left hand and fingers and at times my right hand and my tongue? my left foot also plays up .so after reading your post I am sure you have given others hope including myself. keep doing what your doing enjoy your new life ☺ Linda

  • Hi Linda,

    I had all of your symptoms and also got the strained look from the specialists when they saw my results.

    Unfortunately I still suffer a lot of complications, the tingling, neurological damage from the op, etc... Some people are lucky post op that after 6-8 months they are totally fine and lead a Disney like life. The other half unfortunately... But hey I'm still here and alive.

    I know how difficult it is to give up drinking, specially me who's Irish and loves a drink but you can do it. Each day at a time, then each week and then string a few months together. If I can do it anyone can.

    Good to hear from you and all the best to you 👍

  • Thank you camil8 .I can only imagine what you have and are going through but you came out the other end alive and able to be with your family still which is more precious than Any material things money can buy. I am doing ok so far with not drinking but it's the tiredness and insomnia and this new nerve problem I have to deal with now.. but it is all part and parcel I suppose. i have every faith that in time you will get stronger. I don't know what lies ahead yet for me but I know transplant will be on the cards if I am lucky. Thank you for your reply. my best wishes to you 👍 Linda 😊

  • the mood swings sound like encephalopathy which is like blood poisoning, it's treatable

    ''tough love'' he sounds like he was reasonable at one time. so tell to get him to get his affairs in order for you, the business, and the children.

    sorting out your last wishes really focuses the mind on mortality. and could be the kick up the thingy he needs

    BUT as you know he has stop and stay stopped

    love & peace carl

  • Thanks for messaging :) I appreciate all the support everyone has shown. His recent bleed has stopped him drinking, but I still worry for the future.... trying to get him to think about 'worst-case' might help to focus his thoughts - anything's worth a try!!!

  • RuthieD

    Hi, and welcome to the site. Your plea for help is understood by us all, to attempt to resolve or diagnose a solution by text is not possible, but some things (apart from well wishes) can be suggested.

    IF (and it is rather likley, from the sound of it) but I F Hepatic Encephalopathy is "upon" your hubby, then his mood swings are uncontrollable by him. Carllovat suggests it is treatable, well Lactulose and Rifaxomin are the two main agents used, they may help. it is not a cure. IF H.E. is a big part of the issue, very few medics (e.g. G.P.s ) have poor understanding of it.

    I talk from someone (male) who had liver damage (PBC) and H.E. and together we (me and my family) suffered, it was more managable once I and they realised my behavioural abnormalities were brought on by H.E. but the problems continued after we "sussed" the cause, that is the nature of H.E.

    My wife was in exactly the same position as you. Including kids and business. We did not have the drink issue on top, which only makes things worse.

    I hope you have support from friends and family. You need help from medical people to identify IF H.E. is present and to try to get hubby to accept it. Then you can all start to work together on it. trying to get a proud male to agree they are mad (which bluntly is what accepting you have H.E. is about) is difficult, I talk from personal experience.

    P.M. me if you want to chat.

    Stay as strong as you can, you must, for the children and your self. Good luck.

    Charlie.

  • Thanks Charlie - it's the getting him to accept he's ill that's difficult. He seems to think that if he doesn't drink anymore, everything will be fine - but I know that's not true. He doesn't seem to recognise or acknowledge his symptoms. I just need to keep chipping away at him, I think!! Thanks for taking the time to send such a long reply. Fingers crossed for the future!!

  • hi RuthieD. you have a lot of support here on this group. I too was like your hubby , I had recently split from an abusive marriage and alcohol was my escapism but then my dependency. I kept on drinking while I was living with my dad .mum passed away when I was 28 .i am 55 now. Only when I was admitted with ascites to the point I could not breath did the realisation hit me .told 6 months to live as I had three drains done in 4 weeks due to liver failure . I had scans done .x rays and the awful endoscopy that I had refused to have done.. Only my dad was the one to make me have this done

    no varices was found only an ulcer. giving up the drink was ok in hospital but when discharged I had to get outside help to start with. I had to push my gp last November to get me to see a.hepetologist .I am glad that I did or I would still be under no care even now. keep your chin up.. I have faith that things can turn out ok in the end as long as we follow medical orders .sending you both my best wishes 😊 Linda x

  • Hi Ruthie,

    Welcome to the forum, we hope you will get lots of fantastic support from others in the same situation as you.

    You may find some of our publications useful to read, here is the link to our patient guides;

    britishlivertrust.org.uk/pu...

    The British Liver Trust helpline is open 10-3pm Monday to Friday if you would like to talk,

    Warm wishes,

    Rebecca

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