Hi, Im new to this forum, and hoping for some support as I feel a little lost! My husband was admitted to hospital at the beginning of December 2021 with gross asceties and jaundice. It was a battle to get him to even see a Dr and I had to lock him in the house and force him to get help, as he was dying in front of my eyes. Im only 44 with two beautiful children aged 13 and 10. We have been happily married for 16 years. We have both always enjoyed a drink, but my husband became more dependant with stresses from work, he was drinking pretty consistantly and most evenings having a bottle of wine. As he was feeling so poorly he stopped drinking on the 30th October and has abstained to this day. Once finally admitted he was diagnosed with decomoensated cirrosis of the liver, during his 8 day stay due to covid I never got to speak with a Dr/consultant, as a result I felt very much in the dark. My husbands birubin levels were through the roof at 187. So theres been much confusion. He had several drips, 1.5stones of fluid drained and a biopsy. He was put on diuretics, vitamins and build up drinks. He made it home for xmas but it was a wash out. He slept for what felt like forever. He still has extreme fatique. We have been to day care twice, both times not needing a drain, they upped the diaretics and it seems to be keeping the fluid at bay. His weight went down to 10st2 so he us extremely thin. The billirubin went to 127 in Jan and 88 beginning of Feb. Because of this good news daycare no longer want to see him unless anything changes. He also had an endoscopy the result of which was no varicies. We are yet to recieve biopsy results which I find odd. Our next app is with the consultant at the end of April. I feel so in limbo. My husband is like a different person, he takes everything out on me and I spend an awful lot of time in tears, he cannot deal with me crying. I dont know what to expect? What happens next? They have mentioned a transplant on several occassions. Can his condition improve? Or is his life expectancy really short? Sorry for the long post!
Husband recently diagnosed with decomp... - British Liver Trust
Husband recently diagnosed with decompensated cirrosis of the liver
This is exactly the same as us my hubby a little older 56 he drank everyday but started to drink more when I said anything he would say I know I'll cut down but he then started hiding his drink cider was his chosen liquid I would find it everywhere lockdown was our turning point although we both stilled worked through lockdown with not going anywhere else everything came out I found out the real reason ste drank we went through hell I thought he was drinking half to what he was he was drinking 12 pints cider a night so with help he cut down to 6 still to much but the plan was to reduce and reduce then in oct we went to a charity night ste was out of control he drank and drank some more then about 3 days later started being really poorly he ended up in hospital in and out till dec same as your hubby ascites jaundice constipation like you wouldnt believe and very very sleepy hes now the opposite he shattered but cant sleep so as stays downstairs so he doesnt disturb me but I end up awake with worry anyway hence my 3 am reply to you . We have our first gastroenterologist appointment on 3 may as yet all I know is ste has decompansated alcohol liver disease his last drink was 9th oct ste has gone from a 17stone man to 13.10 he has a dietician who rang him yesterday diet is really important he stabilised at 14.4 but his weight is going up to 15.2 as is his stomach so we not sure if ascites is doing this so I am monitoring it if his belly keeps on swelling I will take him A & E He is getting more breathless i weigh him every day apart from that like yourself with covid i wasnt allowed in hospital so everything is a waiting game I feel scared and very much alone I cry in bed most nights read things on google then regret it straight away so when I found this group feel so much better .I know we got a long rd ahead I know life has changed for us I'm trying to adjust to this new way of living I have fantastic friends who always check up on me and ste has a few good men who ring him for chats ste has no energy to do much at the min so i go for coffee with my friends all for a meal on my own to their house just to get out and vent we have 4 boys all young men now 2 still at home so they are great they all know everything that's gone on we have no secrets any more and they are a massive help to us and when I do go to friends they are here for their dad .I hope you are battling through it it is the worst time we have ever been through like yourself probably it's not easy and we will probably cry more tears I am thinking of you from one wife to another here anytime to chat take care🥰
Thank you for taking the time to reply, I read your posts and thought we were in a similar situation, its so tough isnt it. My husbands hasnt been fazed by not drinking, Im hoping this continues. I find the unknown really difficult but having stayed up half the night last night reading others stories it seems time is a great healer. I feel so upset as my husband is pushing me away, everything seems to be my fault and I cant bare the way he sleaks at times,he wont accept he is forgetful and confused at times and I wonder if he even realises quite how poorly he is. Xx
Ste didnt remember a lot from oct to dec has swore he will never drink again and he is doing everything he can to get better but yes time is a healer our dr said it's a long rd but he is prepared to do whatever he can to improve. 🥰 take care
Thats the same ss my husband, he even said he had no idea how poorly he was back in December, you take care too ❤
Hi, I was in a similar situation I was diagnosed with decomp cirrhosis 8 months ago, with ascites, jaundice & I’d lost a lot of weight, I had 13L drained and weighed just under 7 stone,
The first sort of 4 months I was awful, I was so snappy and short with everyone if I wasn’t asleep I would just be in a mad mood and snap at everyone who tried to make me feel better, now I feel completely normal, I’m living basically a normal life, i still get tired quite a lot but it’s something that’s getting better and better, we now laugh at how grumpy and snappy I was! I go to see my consultant again end of feb, it’s usually a liver function test and a chat about whats happing, but I really don’t think I’ll need a transplant anymore surely I would feel unwell if I did! Decomp cirrhosis can also go back to compensated cirrhosis, a nurse said to me when I was worried about how long I would live for if I look after myself I’ll die with cirrhosis not because of cirrhosis
Just make sure he stays sober and eats really really good if you can! Also I talked to the liver nurses at my hospital in the first few weeks and they upped my build up drinks and that made me less sleepy all the time, there’s also a liver trust phone line ran by nurses you can call, try not to worry too much & good luck with everything 🙂
Hi its comforting hearing someone 8 months on ste is 4 months diagnosed are you able to return to work or is that still a hurdle 🙂
I’ve just started working part time again and hope to get back up to full time soon, although the past 2 months I was retraining as I was running a couple of bars before and that’s definitely not a good idea anymore!
Thank you so much. This is refreshing to read. At the moment staying sober seems to be the easy part, although Im aware that can change. He is exercising daily with our puppy, which is a godsend, he has slowly built this up. He keeps a track on his fluid intake. He does all his own food, although he tries to eat little and often to me its still the wrong foods, toast, sandwhiches, cereals and ready meals. I feel food is the only thing in his control at the moment so Im leaving him to it, I try to cook and get all the healthy foods in but he is not a fan, having dropped to just over 10st I figured him eating was better than not eating, he does look and keep an eye on salt content. X
Yeah like you said eating anything is better then nothing, the fact his ascites hasn’t returned is a really good sign, maybe he will eat better when he starts to feel abit better and gets used to his condition, I have something in place still so I can call a rehab team if I do start getting bad cravings for alcohol even though I found it quite easy to stop, I know that makes my family feel a lot better just knowing it’s there if I need it, my puppy was a absolute god send aswell! Getting outside to walk him was so good for me!
The key thing for him is to not drink. You'll hear from others who have been in similar stages of illness and have improved their health. Is he getting any support to stay sober?
He is 16 weeks without a drop of alcohol, at the moment it doesnt seem to be a problem, although he has become quite reclused. He saw the alcohol care team whilst in daycare in ghe beginning of January but thats it. Nothing has been followed up x
It's great that he's gone that long without drinking. I hope he manages to keep that up and not be fooled into thinking he's not too poorly and is safe to drink again. He's lucky to have you by his side. Remember to look after yourself too.
Thank you ❤ I too hope for that, he has done ever so well, but I guess the test is when he feels a bit better. X
Hi and welcome to our forum,
You are welcome to call our nurse led helpline for a supportive chat on 0800 652 7330 Mon to Fri 10am to 3pm.
Best wishes
Trust1
Thank you very much 😊
HelloAll this is so familiar, I too have been through this and still doing it. Husband stopped drinking (or so I thought and even said as much to transplant team) then found out he was hiding it! (He became a covert alcoholic)He was very hurtful and made us all feel guilty for his drinking. We were 'treading on egg shells' around him. I cried everyday. His bilirubin was 135! Finally got to the bottom of it, he just couldn't accept his illness but outwardly saying he was coping. Paid for a private (nhs waiting list to long) councillor who dealt with life changing illness, she helped him. We would manage a month without drink and then I would find it again but he is turning things around slowly. They break our hearts but we stick it out. He has taken just under a year to get his sense of humour back but still decopensated and decided he cant face a transplant. Bilirubin down to 75 in a year. His consultant said with a good diet an no alcohol he could turn things around, so what I'm trying to say is there is hope.
Things move slowly but I went to my gp and said I wasnt there to ask questions about my husband but there to give them information about him and told her about his behaviour and that i was struggling. Things moved a bit quicker as she passed information on. I now attend all his appointments with him and ask questions.
I wish you luck and hope things improve for you and your family.
Your quite right when you say its like walking on eggshells and how they break our hearts, Im a tough cookie but this is the hardest thing we as a family hsve had to face. I feel so sad for our children. Thank you for giving me hope. I wish you much hope too ❤
Hi. Its fairly unusual to get to end stage Liver disease on a bottle of wine a night, but some do. The process is that the alcohol overloads the Liver, it swells because it gets full of fat due to not being able to process the Alcohol faster than its going into the body. When it swells the body thinks its doing a good thing by sending in the immune system to try a crude "fix", this is when the scarring happens. The scarring is like gristle, it can block blood flow and of course scarring cannot carry out the Livers normal functions, you can then get Ascites, high bilirubin etc. When someone in your husbands condition stops drinking the scarring will remain, how ever the cells that are still full of fat and not scarred will drain of fat and return to normal Liver function. So he can affectively gain some of his Liver back. This is of course different for every case, some get alot of function back, some don't.
Andy Fordham the darts players was in a similar situation to your husband and Lived for many years when he stopped drinking. The Liver can adapt over years, but 6 months is the main area of improvement. The goal for your partner is to return to "compensated cirrhosis" he will still have scarring but have enough cells working to live his life. Your partner has seen improvement with Bilirubin, "127 in Jan and 88 beginning of Feb". He needs more improvement obviously, to give the best chance a Liver friendly diet is in order.
Its a VERY good thing that he does not have varices, again these are caused by the scarring. Imagine holding a water hose up against the sponge(Liver), the water will dribble through the sponge. When the Liver is badly scarred the sponge becomes like concrete and will not flow, the water hose will build up pressure and swell, this would be like the veins attached to the Liver and they can eventually burst, sometimes causing death. The Liver is immensely high pressure, more that the Jugular vein.
Thank you Smegmer the way you have described it is really helpful, I must add my husband was also on Dioxicylin for 4 years for a skin condition, I believe this mixed with his alcohol intake possibly sped up the deteriation x
I was diagnosed with de compensated cirrhosis nearly 10 years ago. My advice would be to listen to your Hepatologist and follow their advice. She said to me that I didn't develop cirrhosis overnight, therefore wasn't going to show any improvement quickly. It actually took 18 months for me to get back to some sort of normality. All I seemed to do was sleep and even now I still struggle with fatigue. Cirrhosis is not an immediate death sentence if you follow medical advice and are lucky. If the illness is caused by alcohol, like mine was, then you must immediately cease. I have been compensated for years and can live a decent life. There's loads of people worse off than me, and I count my blessings every morning I wake up and look at the blue sky.
I have varices but take beta blockers and at the minute they are ok. My spleen is nearly double the size of what it should be,, and again I am ok. I'm alive and will never drink alcohol again, ever.
Also don't google. Only look on this site. Otherwise you will get frightened. I made this mistake in the early days.
It's still very early days for your hubbies, but don't despair, there is light at the end of the tunnel. I wish you all the best
Very inspiring to hear Oscar. Even for me being newly diagnosed with compensated cirrhosis. I 100% agree about NOT looking at GOOGLE!
Thank you Oscar21 ☺️ yes the illness has been caused by alcohol, he has not touched a drop for over 16 weeks, so I guess giving himself the best chance. Thank you for your wise words x
HI Rockyroo28
Bilirubin coming down so that's good, mine was in the 800's at its highest, so take comfort in that it could have been worse. I am now compensated and you wouldn't know I had anything wrong with me unless I told you, so there is always hope. The crucial thing, as has been said already, is alcohol is now a deadly poison to him, he needs to treat it like drinking bleach.
I second it being Poison! 800's Ubwa, that's insane. I never heard of anyone getting that high. I'm glad you turned it around.
Was like that for nearly two months too then suddenly began to reduce by up to 50% each day. Always had a “go big or go home” type of attitude to everything I do - I probably should have changed tack with that though 😂
I was the wards curiosity, I had the medical students using me as a live case study, so at least it helped someone…
Wow 800s that unbelievable, thank you for your advice, I hope you are well now xx
Ditto x
Can’t complain :). Wasn’t easy to get here though.
To add, it’s very important he eats and takes in enough calories, or it will only get worse, you need fuel for the repair. If not enough fuel is provided his liver will start eating his muscles which will put extra strain on his system, especially his kidneys. If he can’t physically eat, get supplements. This is the single biggest (next to not drinking) contributing factor to my recovery I am pretty sure.
He is eating, and trying the little and often aporoach, he also has 1200 calories a day on the protein drinks, and takes supplements xx
Sorry to read about the situation you are in with your husband. Be sure he only takes suppliments which are prescribed or recommended by his specialist. Many expensive over the counter suppliments can actually cause further damage to the liver. Make sure while taking care of hubby, you look after yourself too. Going through this is very hard on the family. I went through it with my husband for years until the alcohol finally killed him 12 years ago. Your hubby stands a good chance of living a decent life beyond this as long as he stays off the booze, eats healthily and exercises daily to keep his muscles built up. I wish all the very best for the future.Laura x
Yeah I should have said “get supplements prescribed” - but assumed he would have been through that path while in hospital with a nutritionist.
Hi. Always best to stress that point. It's so easy to be persuaded and misguided into buying "liver cleansing suppliments" Hope you haven't suffered to much wind damage in your neck of the woods !
Lx
We are yet to see a nutritionist believe ut or not, the nurse in January was very helpful re what he should be eating, salt intake etc. We have a phone call appointment in March with them. Yes all supplements are prescribed x
Im sorry to read about your husvabd Laura. Must have been and Im sure is still very hard for you. Yes he only takes what he is prescribed, he wont so much as even take a paracetamol! Thank you x
Hi. It was tough at the time and you never forget but life is wonderful now, remarried almost 5 years ago. Our children are grown up now and thriving just sad their Father isn't around to see for himself. Your hubby is doing so well. 🤗
Thank you. It is tough on the family, our kids have been amazing so far and he has a lot to live for. Im pleased you found happiness ❣
Just read your post. It’s a difficult situation for you so make sure you don’t forget yourself in all this. It’s all too easy for him to become the focus and for you to neglect your needs. So plenty of treats, good nutrition and sleep. It will help you keep your head clear, which can only be good for him and you. I have cirrhosis, I was diagnosed nearly a year ago. I was very sick at the time. I was admitted to hospital with a deep rooted infection and they diagnosed me then. I had many of the symptoms your husband has. I lost a lot of weight, was a strange yellow colour, developed ascites, was very fatigued and my blood results were all over the place. I was pretty sick when I was discharged. I needed carer support. Slowly over the course of the next month or two I started to improve. Obviously alcohol was a no no. I haven’t had a drink in nearly a year. My appetite was terrible and was prescribed protein supplements. To be honest they were my sole source of nutrition for a while. My dietician was brilliant and said eat what you feel like. It’s better that you eat something, we can sort out your ongoing diet once we’ve got something inside you. It worked and soon my appetite started to return. Now I eat my cirrhosis diet. It’s Mediterranean essentially with extra protein. Chicken, turkey and pulses are the base. Once I started to get food inside me, I felt better. I took my meds, started to exercise and remained abstinent. Within about 3/4 months my bloods had returned to normal. Amazingly. I started to put a bit of weight back on and my consultant was delighted when he saw me at my review. He had to check my notes when I walked in, because I looked so much better than when he’d seen me in hospital. I’ve continued to exercise, eat well, no alcohol and take my meds and feel great. In fact I feel better than I have in a long time. My bloods are all normal (checked again last week), I’m now a perfect BMI, my muscles are all back and if you walked passed me on the street you wouldn’t know a year ago I couldn’t walk! It takes a while to develop cirrhosis and it takes a while for your body to get better. Once the cause is removed then it’s amazing how the body can recover.
Hi, your situation seems pretty similar to ours, although we are older, my wife is 70 but had been drinking heavily for twenty years or more, it was not unusual for her to get through 3 litres of gin per week, I used to find it hidden all over our house and even in the garage where she keeps her gardening tools etc. She was eventually so ill she was admitted to hospital in March 2020 and had several litres of fluid removed as you can read my earlier post as to the outcome etc but don't give up. My wife has been through hell and back and lost a great deal of weight but here we are nearly two years on and she is back to her natural weight and eating healthy food and getting plenty of fresh air , our lives have changed so much for the better now, she is like the woman I first met before the heavy drinking became a massive problem between us. It been challenging and many times I have felt like leaving her because she wouldnt seek professional help. Your case with your husband if he can stay off the booze will improve, the liver is an amazing organ than can continue to function as you move on and he stays off the drink, so you have to be tough and stick with it although its difficult and the symptoms you describe although varied for each case are pretty much par for the course. My wife still gets very tired after doing simple tasks and her sleep patterns are very random but she is still here after two years we didn't expect her to have .
This is a very familiar story to mine. My husband, as he is now, was a secret drinker and I didn't understand to what extent. In 2015 he was admitted to hospital, with what I was told was an Infection in his abdomen. I didnt get to speak to his consultants at that time, so didn't know he was showing all of the warning signs of Liver Failure. He did slow down, but gradually his intake increased.
In 2018 his drinking was totally out of control. His vice was Vodka.
He finally quit drinking in November of that year, but progressively got worse in terms of illness.
As well as being unwell (vomiting, being in pain, constantly sleeping, drowsy etc), He was absolutely horrible. He had no patience with me, his Children, or anyone. He shouted at me a, lot. He wasn't nasty, just horrible. I was seriously hanging on by a thread.
Just before Christmas I persuaded him to go to hospital, where he proceeded to discharge himself.
On Boxing Day 2019, he was finally admitted by Emergency Ambulance being barely conscious. I was told to prepare for the worst. He was Green. His Bilrubin was 540+.
I was told that they had never seen anything so high, ever, before.
I was told that even if they contacted our local Transplant Centre, they wouldn't do anything for him...I don't know how, but after 3 weeks he walked out of hospital and started the journey that we're on now, which is awaiting transplantation. The local hospital Consultant referred us to QE.
He was listed in July 2020, at the age of 39 years old.
He has totally changed his whole outlook. He knew he was extremely lucky to have walked out of Hospital.
I'm so proud of how he has changed. He needed to make that choice on his own. Not me, shouting at him, but him realising how bad things were etc.
Our first meeting at QE, went really badly. The Consultant and my husband head butted over certain things. I left feeling like it was going to go backwards, BUT, I think that Doctor knew how to push his buttons enough that he now does everything that is asked of him. I'm thankful for that Doctor being how he was. He was one who, in the end, believed enough in him to put him forward for Transplant.
We attend QE at least every 6 weeks to see the fabulous team. My husband has a Portal Vein Thyrombus which is closely monitored, as well as other health issues, caused by Decompensated Liver Cirrhosis, HE, Varices, Ascites, Diabetes etc.....
Being on the list has proved hard for us, both, mentally.
We decided to get Married, and planning that whilst being listed was a tad stressful, but last October we did it!
Waiting for a call is hard, but when I think at how things could've gone....
I didn't mean to ramble on so much.
I guess, I just understand where you are right now. It's very tough. If you're husband had decided to quit for good, then honestly it gets better. It's gets so much better. It's hard, but a different kind of hard.
My husband doesn't really see his family, but I would've been totally lost without my family, who have been like a rock.
You need to have someone to talk to, too.
Our referral for Transplant came from our local hospital once they had stabilised his bloods, so they had a base at what is now, normal, for him. From that initial appointment to getting onto the list, took us just around 12 months. I guess they needed to know for sure, that he wasn't going to slip back into his old ways.
We have been told that pre-Covid he would have likely been operated on by now. He's starting to decline a little, having been in hospital recently with HE. He still spends all day on the settee. I work, but need to leave him meals and drinks as he just doesn't have the energy to do anything.
Onwards and upwards..
I hope your appointment in April goes well, and I'm sorry again for wittering on. xx
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