Very Sick Husband With Cirrhosis - Wil... - British Liver Trust

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Very Sick Husband With Cirrhosis - Will Things Get Any Better?

Silverscale profile image

My husband has been drinking heavily for years and this has finally caught up with him. He has had low platelet count for a while now but in August we noticed he was getting very jaundiced. At this point, he had blood tests and was admitted to hospital.

He is about to be discharged now after 7 weeks and I feel overwhelmed by how much care he now requires. He has been diagnosed with cirrhosis and, in the course of his hospital stay, has developed complications such as a very serious infection (now sorted), severe muscle wastage, lots of bruising under the skin and ascites. He can barely walk across a room and also has issues with incontinence. He can’t tackle stairs even when hanging onto a rail and being supported by someone. The hospital is desperate for a bed yet I don’t feel up to the task of caring for him.

What I’d like to know is whether anyone else has seen a similar situation and did it get any better? Is it beyond the realms of possibility that my husband might eventually go back to leading a reasonably normal life given a lot of time, rest, appropriate food and abstinence from alcohol? I’m in a very dark and scary place right now. My husband is only 47 and he was fit and able to work right up until he got admitted to hospital. Seven weeks later, I barely recognise him.

45 Replies

hello there, i was diagnosed with cihhrosis too due to alcohol last august,i was only 34 yrs old.i have ascites too, it was drained once,i have hepatic encepalopathy, severe malnourished and very weak. ever since i was diagnosed i never had a drink and promise not to touch one anymore as i was so scared now and i want to see my daughter grow. right now i can say that i slowly going back on track. i can now walk every morning with my daughter, ride on a motorbike and do light chores.

As someone said in here, ,"there's a life after cihhrosis".

Just follow what the doctor says and in time your husband will get back on track also. He just need also to stop drinking.

I hope i can somehow ease your fear..

Thanks so much for sharing your story here. It's very heartwarming to hear that you are getting back on track. I can imagine your daughter was a huge motivational factor in your determination to recover from this.

Hi. Yes my husband too was diagnosed with alcoholic cirrhosis at around the same age as your husband and became desperately ill. Unfortunately because he didn't give up drinking soon enough, he died at 54. However if your hubby gives up the alcohol he could have a far better outcome than we had. You will need to be very strong and determined as his carer. It can be extremely frustrating and exhausting as you are not only looking after a sick husband, you may also be dealing with him struggling to give up drinking, the one thing which maybe the most important thing in his life right now . If you need further support or advice going through this, l will be happy to help.Take care of yourself.

Laura x

mtk0925 profile image
mtk0925 in reply to ciroze_05

Wow such a young age to be diagnosed! Can I ask what lead to the diagnosis? Also did you have fatty liver first? I drank heavily in college slowed down in my twenties and thirties but I still worry I did my liver in. Ultrasounds have been clear liver enzymes stay relatively normal to mildly elevated ALT 43 AST 36

ciroze_05 profile image
ciroze_05 in reply to mtk0925

i was a heavy drinker.. i can drink everyday the whole day through out that 365 days.. and i dont know how many years ive been doing that.. thats where the diagnosis came from.. im 3months dry now and promise not to drink anymore as im so scared to feel what i felt before..

mtk0925 profile image
mtk0925 in reply to ciroze_05

Congrats to 3 months sober! Are you male or female? Just seems women have weaker livers? I seem to have a weird one. My dr said NAFLD but I’m thin, every time I take any type of Medicine my liver enzymes shot up. I only have 1-2 drinks a week but I’ve cut back as the summer is over so not every week anymore

ciroze_05 profile image
ciroze_05 in reply to mtk0925

hi there, im a male..

I can only comment on what happened to me. It took me months to get my mobility back after being very unwell back in 2018. Before (and during) my hospital admission I could barely walk and collapsed all the time. Like my legs couldn't support me. When I went home I was dependant on my wife to the extent she'd have to bring a bowl of water to the bed for me to brush my teeth as the walk to the bathroom was beyond me. I had issues with my memory and - like your husband - incontinence and much more. As someone said to me the body (and mind) has been through a hell of a shock and healing or what healing is possible can take time. Three years on I'm unlikely to be running any half marathons but I'm doing OK - better than I ever anticipated. I'm 49 by the way so I stopped drinking at 46. I hope this gives you a little comfort than things can get better by doing what is suggested by medical professionals and so on.

Silverscale profile image
Silverscale in reply to

Thank you so much for taking the time to share your story. This is exactly the kind of insight I was looking for. Your story has given me a lot of hope and well done you for getting to where you are now.

in reply to Silverscale

You're welcome. My wife and I talk about that period occasionally as it's important for us to acknowledge it without living in the past. A lot of it is hazy to me and I'm like "was it REALLY that bad?" and she'll say "yes". My memories of A&E are awful and that's just what I remember so add what she's told me and yes it's very unpleasant to think about but I can deal with it. It's taken a lot of effort on my part to get better and grow as a person and also a commitment to not drinking alcohol. I needed help with the latter and "reaching out" to a local recovery organisation was one of the best decisions of my life - nine months abstinent. I say abstinent rather than sober for my own reasons. A guy at the organisation (not AA or 12-step based) who became my mentor said "are you enduring or enjoying your sobriety" (he used the word sobriety!) and for a lot of reasons including being terrorised by thoughts of what would happen if I drank I could see I was "white knuckling it". I started going to relapse prevention groups and SMART - a different recovery approach to AA which for me was a great fit. I'll attend groups again once they are face to face as the interaction and themes I really enjoy. I also co-created and co-run a private group on Facebook for people with Alcohol-related liver disease. If your husband is active on social media - obviously unlikely to be at the moment - he'd be very welcome to join.

Minuta profile image
Minuta in reply to

Hi Phil, what great success story, so happy for you and your loved ones. My partner has been released from hospital 2 weeks ago, they had to drain him, he has encephalopathy, some muscle wastage with cirrhosis. These next 3 months are essential for him to build him, eat and exercise, but he is finding it hard. He never ate much and now with no appetite he struggles to eat loads. I try to give him the most nutrients possible and now he is slowly pushing himself. It took a long time to make him understand there is no "later" at the moment so he is trying. But he is getting weaker through sleeping most of the time, now that he is finally trying to move more he has pain in his hip, his legs are weak, his whole body is loosing muscle strength. I struggle to know how to motivate him, do I tell him to push through through pain or do I find some exercises to do in bed? Like upper body gentle exercise then legs, etc.. Also, I am giving him massages, gentle ones, but he seems to love them. His legs, his arms, head, and lower back. I do it a few times a day.

Thank you to you and everybody that writes on here, it is invaluable the help myself and surely many others take from reading it.

Much love and health to all 🧡🙏

in reply to Minuta

Are you being given advice on nutrition, exercise and so on? I know the score - when I left hospital I could barely walk and at one point when I was younger I used to win cross country races. When I left hospital I was given a couple of sheets of paper about food, a list of AA meetings, a prescription and a follow-up appointment. Because of the psychological side of it all I'm not sure the gravity of the situation had really hit me or it was kind of intermittent if that makes sense? I don't see myself as a success story (I appreciate the compliment though!) as I still feel shame at times about specific things. However knowing a little about the stats - not facts - about people who continue to drink with a diagnosis of Alcohol-related liver disease it would appear I'm in the minority: I don't drink.

Minuta profile image
Minuta in reply to

Hi Phil, yes you are a success story, I know what a hard Road you had to walk, don't take that from you. We all have things we've done in life to feel shitty about, isn't it? And yes, same here, given paperwork and meds, a zimmer frame and a commode. He hasn't had to use the commode do we adjusted it as a chair in the shower. He was offered a care package, but he declined it. I wasn't present. He is seen by a specialist once a month, I communicate with the liver nurses who are same department and they again advise nutrition and exercise. The specialist sent a letter saying it was wrong to not be discharged with a care package and he isn't in the right frame to make such decisions himself, so they are working on this now, but it is a long wait, he could have had it implemented if the hospital did it right. I stopped working as he can't be left on his own at this stage, so I have been constantly "nagging" to eat, drink, get out of bed. He just wants to sleep. He understands that alcohol has got him here, ( he was a functioning alcoholic for a long time before it got the best of him ) and he has no interest in it or anything that might damage him further, that is a good sign. If he was to follow all to the point, he would either get a bit better and his liver might gain some function or he would be healthy enough to go on transplant list, if he stays alcohol free and is mentally fit enough to prove he wouldn't relapse. We had this chat with the specialist on the first visit. Due another visit at the end of the month. He is having blood tests in the mean time, nurses advise on adjusting medication, fluid intake, etc, so I feel the support from that end and I am very grateful for it.

Alina

in reply to Minuta

Everyone is different so I won't give false hope but I can tell you with 100 per cent honesty I've seen real improvements in the health of many people I know with Alcohol-related liver disease including cirrhosis. Time, patience, doing what's suggested including a commitment to abstinence from alcohol can make a big difference. I think gentle encouragement and praise over 'small' achievements from a spouse, family member or friend can help and also make sure YOU are getting appropriate support as I know from my own relationship the stress for a loved one. The other side - well another side - is the mental improvements I've seen in myself and others. I realise now that - and I've used this expression before elsewhere - I was "corrupted by alcohol" in the sense I was an anxious mess years before my liver was damaged. I worked in publishing and went to a lot of functions where alcohol was freely available and I knew on leaving hospital it wouldn't really be "safe" for me to work in journalism and to be honest I didn't want to anyway. As I've said to other people here I created and co-manage a private group on Facebook which is only for people diagnosed with ARLD or are awaiting results. If he's active online he'd be very welcome to join. There's no pressure to post or comment and hopefully he'll benefit from reading about member's experiences. Something to consider.

Silverscale profile image
Silverscale in reply to

Thank you Phil_1972. My husband is home now (arrived home on Thursday night) and he is still much too sick to even join an online group but I will definitely mention this to him when he’s recovered a little.

I am terrified he will go back to his old habits. Last night, he managed to get in our garage and grab a (fortunately non-alcohol) beer which he drank then tried to hide from me because he knew it was wrong to be drinking anything like that. I am scared that he is back to his lying ways and that it won’t take much to go back to the secret drinking he used to do before his hospital stay.

I know that he needs to be the one to ask for help and he isn’t in a fit state to even send an email just yet. He is semi confused and refuses to get out of bed other than to go to the loo (which is every half hour) and apparently these random night wandering whilst I am asleep.

Minuta profile image
Minuta in reply to Silverscale

He may have encephalopathy, he won't be able to think straight. We were told that having a liver disease will interfere with sleep pattern.

My partner was badly affected by liver not functioning and the GP were not responding to results of his blood tests, he was in hospital twice when he already had swollen stomach and legs, taken by ambulance due to falling not being able to get up and they still let him out. I was dumbfounded at how they were saying he is ok.

On the third ambulance trip in a month they finally realised he was really bad. For 2 weeks he was closer to dying.. He slowly improved and even though some encephalopathy is present, he seems to completely understand any amount of alcohol will kill him and therefore has no interest in it. But for about a month or two even before that, he should have been probably sectioned as his brain wasn't his anymore.

In hindsight, I wish I was braver, but every single situation is different.

I feel for you, it is incredibly hard where you are now, I found it incredibly stressful, now this part of life has a whole different level of stress, not easier yet, but with more hope than despair. I wish you lots of strength and resolve and please remember, as Phil says, make sure you look after yourself the best way you can! Alina 🧡

Silverscale profile image
Silverscale in reply to Minuta

Thank you Alina. I’m pretty sure he does have encephalopathy although the hospital staff have never mentioned it once. He’s had a “foggy” brain for a few years previous and has always been incredibly defensive when I brought it up. How he is now is a whole new level but he has a way of doing small talk that makes the average busy person believe he’s thinking more clearly than he actually is. This is a man who has a degree in quantum physics and it’s so sad to see his brain turned to mush.

May I ask how long ago that your partner was last admitted to hospital? And is he still improving or has he hit a plateau at this point?

Minuta profile image
Minuta in reply to Silverscale

He was admitted on 25th of august and came out 23 September. For 4 weeks he wasn't able to get out of bed as on top of cirrhosis, ascites, and everything else he also had internal bleeding on the knee he had a transplant 2 years ago. . They couldn't operate as he was too weak, he was covered in bruises and he was bleeding inside from his knee. His leg got huge and deep purple but eventually they managed to stabilise him. He started getting better when he heard the doctor discuss DNR for him. It was weird, he said he doesn't want to die and started improving slowly and that was the turning point. Also these last 2 days he started to cooperate more with me, today being the best day he had so far, before he was treating me like I was pushing him to do things he doesn't like. Now he is accepting eating more and drinking fluids regularly. He is out of bed a bit more and slowly doing movement. I had to be brutally honest with him and tell him there is no more "later". Either he does it now or he accepts he doesn't want to fight and he doesn't spend the last months of his life with me on his case, I promised I will support his decision. He said that he wants to fight so he is trying now. . He can also see that by following the routine he should he is feeling better. Before he was admitted to hospital for months he had encephalopathy and also build up liquid to his legs and stomach. He was getting yellow not just his eyes but the skin down to his shoulders and chest. And yet twice he was admitted by ambulance to hospital due to falls and they let him out after a few hours. I was going crazy. Also he asked for blood tests from GP to check liver as he said he doesn't think its working to them on the phone, and after results they were asking him to go back in another week or so for more blood tests. Then a third time and so on. I was ready to pull my hair out. He was listening to my advice and asking gp and they weren't reacting to how bad he was. Same as the hospital... He was falling not because he was drunk but because he had no balance due to how ill he was. And he had no strength to get himself back up.

I know so much more now than I did before he went to hospital and I realise that if I acted sooner he may have had a better prognosis than he has now. I should have listened to myself and push past doctor's decisions and GP's lack of response. . Also I should have accepted that I wasn't talking to him much the last months, he was really badly gone. But as with your husband, he was very good at tricking people into thinking he was better than he actually was. I wish you lots strenght and patience.

Alina

Silverscale profile image
Silverscale in reply to Minuta

Heh, my husband was admitted one day later on August 26th! Like you, in hindsight I could see that he was declining steadily before that time. For me, it felt easy to put symptoms down to either drink or withdrawal from drink. I now know that a lot of the symptoms he’s had for a while were down to a poorly functioning liver. These symptoms included shaky hands, occasional retching and vomiting, moodiness, bad memory and generally muddled thinking (which he refused to believe was a problem) plus what we thought for years was IBS.

In the week before he was admitted, his skin and eyes became progressively more yellow so I knew something was very wrong. I persuaded him to get a GP appointment which took place over the telephone. The GP wanted him to have some blood tests the following day and, as soon as they saw how yellow he was, they sent him straight to hospital. Amazingly, my husband still felt fine at this point and had been working from home even that morning with no problems. He thought he was going to get more blood tests and would be out later that day. Then he phoned asking if I could bring him and overnight bag. Seven weeks later, he’s home.

For the first week or so in hospital, he didn’t seem too bad. He was walking and talking and able to meet in the cafe. However, the doctor told me he was incredibly sick on the inside. I guess this caught up with him because he declined steadily for the following five weeks to complete incontinence and confusion in addition to ascites, lots of bruising, hydroceles, a nasty fungal infection and then heart arrhythmia (which got reset by performing a stress test then raising the legs).

Then after one week of improvement he’s been sent home. After two days of being at home, he’s actually weaker than he was and refusing most food. I’m worried now that he will no longer be able to make it to the toilet. I have managed with a lot of nagging to get his meds and fluids down him so that’s something I suppose.

Hi silverscale, my husband does the middle of the night wondering too, i cant sleep knowing he's roaming about the house, he also hides his empty cans and bottles about the house or garden, he stored them up once and put them in a bin at a supermarket 🙈

I just wanted to reassure you that a hospital should not discharge someone if they are unable to manage functional tasks without proper assessment. Issues surrounding continence, washing and dressing, mobility, transfers and stairs, have to be addressed as it could lead to an instant re-admission if missed. Talk to the nurse in charge or speciality doctors to arrange for the correct assessments and try to be honest about what you realistically can manage. If someone is deemed medically fit for discharge, it does not mean they are MDT fit for discharge.

Silverscale profile image
Silverscale in reply to

Thank you BlueAster. I have tried talking with the staff about this. Most of my issues are with mental health rather than a physical inability to look after my husband but no one seems to be taking this into account despite the fact that I feel I am on the brink of a complete mental breakdown.

in reply to Silverscale

Hi, you are having such an awful time. The impact that this is having on your mental health, needs to be taken into account because this still affects your ability to meet his care needs.

This is such a common situation that it shouldn’t be a surprise at all to the hospital team. Being his wife, does not automatically make you his sole carer.

There is a duty of care to review his needs in light of your mental health needs. Although you yourself are not under their care, you have to be sure that the discharge plan is achievable as he will be readmitted if this fails. Talk to them again if you are not happy with what’s happening. His washing, continence, dressing, personal care, nutritional and pressure care needs have to be looked at, as well as his ability to sit up, on the bed, move from bed to chair, stand, mobilise, do stairs etc. There is always a solution to all of these issues.

Hdon profile image
Hdon in reply to

A few years ago, when I had some issues with my treatment, I went to the PALS (patient advice and liaison service). Every hospital trust should have one and I found them a huge help in resolving my issues.

in reply to Hdon

Yes every hospital trust has a PALS team. My point was that hopefully it shouldn’t come to that as there are whole teams of different specialist clinical and non clinical staff in the NHS who are solely dedicated to a situation like this day in and day out. These professions regularly stop discharges because of the findings of their specialist assessments.

If things are a little more difficult and complicated, there will be an MDT or best interests meeting, depending on which is more appropriate to explore both patient needs, achievable options, family views and bridge the gap between health and social care.

If a family feels that these assessments aren’t taking place, each profession should explain the outcome of their intervention, the ward manager will be aware as will the entire team and discharge coordinator. PALS can then be involved if a resolution can’t be found.

Trust9 profile image
Trust9Partner

Hello,

I can see our forum members are offering lots of support.

You can also call our nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm should you wish to talk things through .

Trust9

Silverscale profile image
Silverscale in reply to Trust9

Thank you

I’m assuming you have stairs in your house? If he can’t do stairs, can he sleep comfortably on the couch? Is there a bathroom on the main floor? If so and the couch isn’t comfortable, maybe try an air mattress, not the low ones but the high ones and put it anywhere there is a spot in your living room. It might be an eye sore but will probably only be for a few months. Do you have any family or friends who could help you guys out with anything? Like cleaning, cooking prepared meals for him etc?

Yup, we do have stairs. Fortunately there is a decent sofa bed downstairs. However, there is no proper bathroom downstairs - only a toilet. So I guess it's going to have to be sit down washes at the sink for the time being. Friends and family have been very supportive but our nearest family are a two hour drive away so not able to help on a day to day basis.

Hello Silverscale, and welcome.

I think this is the time for some straight talking. This is your hubbies wake-up call. I think there are two very basic, but important questions that need to be answered here. Firstly, does he want to live? And secondly is he ready and prepared to face a life of total abstinence from alcohol.

These are tough questions, but these are choices that only he can make. Any decision he makes has to be because he wants to do it. Emotional blackmail doesn’t work, a doctor telling him he has to won’t work. He’s got to want to change his lifestyle and be prepared to make sacrifices like no longer mixing with some drinking buddies and avoiding those places where temptation is present.

I have this morning replied to Shell2202, please see my reply to her thread, “Coughing up white phlegm”: healthunlocked.com/britishl...

Here I have tried to offer some advice as to where to go from here.

Giving up alcohol can be very hard, and some people just can’t imagine a life of never being able to drink alcohol again. It can be a long road for some people and there are plenty of temptations along the way. Learning how to deal with these triggers and strengthening his resolve with be hard at first. But, over time the temptation and cravings aren’t so frequent and life gets easier. The support and understanding from family and friends can be so important.

There are a few of us on here that have been down this road, and as I’ve mentioned to Shell2202, no one here is judgemental and will hopefully try to help by offering support and sharing their own experiences.

There certainly is life without alcohol. But I would also strongly suggest not to try and drink alcohol-free beers, wines, or spirits. There is always a chance that further on down the road, a liver transplant might be needed (this is only a possibility).

Here a person has to meet certain a criteria. One of the strict rules is that they must not have consumed any alcohol or alcohol-free drinks (beers, wines or spirits) for at least six months. Anyone who is still drinking any of these will not be regarded as being suitable and won’t be put on the liver transplant waiting list.

I hope you get plenty of support on here.

Good luck to you both.

Richard

Thank you Richard. I can confirm that my husband has been extremely positive throughout about genuinely wanting never to drink again because he does want to live as long and well as he is able. I realise that alcoholics often lie about these things but I do believe him on this one.

Thank you for your reply. I asked this question because for some people there is often a reason behind their wanting to drink, for some this may simply be out of habit, while for others it maybe to try and blank out a traumatic episode in their life. Others with a mental health issue may use alcohol as a form of self-medication to try and lift a depression disorder.

For those with a depression disorder, they can get into a spiral of depression, that just gets worse and worse. A person can start off drinking and after a while they can begin to feel happy. But then after a while of continued drinking the depression can become worse as alcohol is a depressant. They can then end up in this vicious cycle.

When they get like this, they very often try and push people away, they just want to be left alone. But the irony of this is that once they have pushed everyone away, they can be left feeling alone and unloved. This is turn will only fuel the depression even more. At this point a person doesn't care about their life or their future, they just want this nightmare to end. It is often hard to break this cycle, but it's good to hear this is not the case with your husband. Thank you for clarifying that for me.

Hi Silverscale, I'm so sorry to hear what you're going through with your husband's illness and complications. It's very hard on partners.

I've seen from my own experience that there is hope if he abstains from alcohol and adapts to the new diet and lifestyle. Follow the medical team's advice and learn all you can from this forum and the excellent British Liver Trust website. When my husband was diagnosed I downloaded all the relevant booklets and diet guides etc. My partner wasn't able to take much information in at the time and I had no idea about liver disease so I made sure I learned as much as I could.

There are lots of people on this forum who have returned to 'reasonably normal life' after a cirrhosis diagnosis, and better I'd say, which I have found encouraging for me & my partner.

My husband was diagnosed with cirrhosis in March out of the blue, we thought he had IBS! After a short hospital stay he was back home and I was shocked at how weak, disoriented and uncomfortable he was. Giving up alcohol was a real shock to his body and mind, he went through a couple of months of being really poorly and mostly in bed. It was difficult as there wasn't much I could do beyond basic care, trying to give him good food and keeping him hydrated. He had a few drains in hospital for ascites build up over that time, which were worrying. But then things began to improve. I'm no expert but his body finally seemed to feel the benefits of giving up alcohol and he gradually became more like my husband again.

Seven months on I'm so proud of him for fighting through it - there have been other health complications but he is a lot better.

You'll get a lot of support on this forum when you need it so don't be afraid to ask questions or share your experiences. I think it's really important to ask for support from the medical team and your family or friends if you're able, to look after him at home, especially if you're feeling overwhelmed xx

Silverscale profile image
Silverscale in reply to steckles

Wow, thank you for this long and detailed reply. I’m so glad to hear that your husband is on the way up now. Great to know that there is so much support on here.

Oh poor you. I hope you are managing to look after yourself too, it’s really important. I was diagnosed with cirrhosis in late March 2021. I’d drunk quite heavily all my adult life but lockdown took it to a whole new level. I got very unwell in Feb and thought it was Covid, I ended up being admitted as an emergency with a deep rooted infection in late March and was very sick by then. I couldn’t walk, eat or do anything for myself. My liver was in a bad way too, I had Ascites, swollen legs and ankles, my bloods were all over the place and I’d been bleeding from somewhere. I was malnourished and in a very bad place. Until then I had no symptoms of liver disease, but the infection had triggered decompensation of my liver. Had all the usual tests, endoscopy, ultrasound, CT. I was in hospital for a good few weeks. Cirrhosis was the diagnosis. I was discharged with a well designed package and had carer support and an alcohol recovery worker. I stopped drinking the day I was admitted and haven’t touched a drop since - over 6 months now. I couldn’t walk when I got home, let alone get into a shower or dress unaided. I’m 54 and looked more like someone decades older. Within 3 week I’d done all the things I was advised and I was waving goodbye to my carers. No alcohol, religious with the meds, good diet, and once I was strong enough physically, exercise. I went from strength to strength - amazing what your body can do when you help it. My last consultant review was good. Bloods all normal, endoscopy shows a couple of grade 1 varicies but no signs of bleeding and no red flags. He’s happy with progress, ‘keep doing what your doing, see you in 6 months. Normal life expectancy by the way if you stay away from the alcohol’. It may not seem it now, but as long as he commits to sobriety he’ll get better. How much better will be down to him. Positive thinking, good diet and a nice long walk every day when he’s ready could well be enough. It’s been enough for me, and from what I read here lots more people too. I really do hope things work out well for you. Please make sure you look after yourself in this process too. Insist on carer support for him, they will oblige if they are pushed for beds, many areas now have ‘help to live at home’ schemes, which facilitate earlier but supported discharge. It’s free for 6 to 8 weeks and can make all the difference. My very best wishes to you.

Wow, sounds like you’ve made amazing progress in just a few months. That’s so positive to hear. My husband does seem incredibly determined to move on from this and I hope he can do half as well as you have.

Hello, I am so sorry for this awful situation you find yourself in.

I lost my soul mate to cirrhosis of the liver exactly two years ago, aged 58. He’d been a very heavy drinker most of his life and like you say, it suddenly caught up with him. Two years before he died, he was given a stark warning with symptoms you describe like your husband. He was told he had to stop drinking , or he’d been dead within two years.

He only managed one year sober, tragically started up his drinking again and died within a year.

I miss him every single day. He was an incredibly smart man, but he could not stop. He turned into somebody I could not even recognise in that last year. Please look after yourself too, i’m a nurse and used to dealing with a lot of difficult situations but this was really something else.

Sending you a virtual hug xx

I am so sorry to hear that BellaKent. What a horrible ordeal. I am getting a sense from these replies that the absolute key factor between survival and death is whether the person is able to abtain from alcohol.

You’re absolutely right. I’m sure he’d still be here now if only he could have

Has your husband seen the physiotherapists and occupational therapists to help him with his mobility and if there are any aids that can support him when he is discharged and also a dietitian who can support with nutritional needs?

These referrals can be done before discharge, assessments done and then you both know what support is available🙏

Although it I

Aotea2012 profile image
Aotea2012 in reply to Lam1e

Very good point. I forgot about that bit, but it was crucial. I was assessed by an OT in hospital and when I got home I had my very own walking frame, seat for the bathroom to help me wash and commode (which I never had to use fortunately!) I was also assessed by a dietician and was prescribed food supplements in the form of milk shakes. They were invaluable when my diet was suppressed and couldn’t eat. I still take them in the am as they help me with my protein intake. I also had copious diet sheets to follow when I was getting better and could cook. I have a follow up appointment every 3 months, (only a phone call) with a specialist dietician to check I’m handling everything ok. I also have the support of a very good GP practice, who do my bloods, check my weight and blood pressure and are generally around to advise on my meds or anything else I’m worried about. I had loads of questions at the start and they have been great. I also have a weekly, which moved to 2 weekly a little while ago, zoom call call with a specialist alcohol support worker who has been helping me in my new alcohol free world. He’s been helpful, particularly when I was first discharged. I think the professionals can see I’m motivated and want to get better. I think that’s probably professionally quite satisfying for them, so I get the maximum from the service. I think what I’m saying is there is a lot of support out there and he will be able to access it, but he must want to. They can only help if he wants to be helped.

Thank you both and yes, he has been assessed by an OT and also given plently of advice around diet. He is actually home now (came home last night) and has very little apetite so far but thank goodness for the Fortisip drinks which he loves.

Hi Silverscale,

Just a few pointers for you that may help.

Firstly, and I know this may sound strange, but a discharge from the hospital may actually be helpful for his recovery as he'll be able to move about more which will eventually help rebuild the lost muscle. Long stays in hospital can often lead to muscle wastage, particularly if the patient has been in bed much of the time.

Dont get me wrong, initially it will be very hard. But, as you have already said, your husband has a very positive attitude and that too will be a big help. You may though need to make sure he does try to do something physical during the day, even if its just a walk round the garden. It will be very tempting in his situation to just to sit around, but if he is to recover than he needs to try and avoid doing that. Again it wont be easy but is essential. Even small things like getting up to make a brew, wash the dishes etc will be helpful.

I see also that Trust have suggested you contact them on their helpline. Please do take them up on that. They'll hopefully be able to advise you on how to get some additional support at home from social care services, even if for a temporary period. Hopefully the hospital will be able to help arrange this before he leaves.

I certainly sympathise with your situation, but I hope you can get some additional support to help, particularly in the early stages. I would also hope that there is some regular follow up arranged from a medical perspective too. Your local gp may also be able to help too, particularly for the pressure it will put on you. Your health is just as important.

I send you all my very best wishes and hope his recovery progresses well. Good luck to you both.

Hi there,My husband was diagnosed with decompensated cirrhosis in April of this year and like your husband he has struggled with his health since last year when he spent 3 1/2 weeks in hospital. ( he’s struggled for years due to different health issues )

I brought him a new bed which he now has in our lounge, we have a downstairs toilet and he basically struggles with day to day activities that we take for granted.

I work full time and have taken on all off the responsibilities of running the house, shopping, cleaning, cooking, laundry etc.

I contacted adult social care at the local council as he was struggling and so was I, they have done a care and needs assessment under the care act 2014, and he has eligible needs, and we are now trying to get things in place, for example having our downstairs toilet turned into a wet room with a shower in, he was given a wheel chair as he can’t walk far, hand rails been installed and a carer coming in twice a week to help him with personal care.

It may be worth getting in contact with your local adult social care team at the council and see what help they can offer you both.

Good luck and take care of you too x

Hi Silverscale,

My husband went in to liver & kidney failure in 2015 and was hospitalized. At one point he did not recognize me. While my husband was not as weak as it seems yours is, my husband did go to rehab for several weeks to regain his strength, so he was not at home for much of that.

We are both quite a bit olderand I was at home so didn't have some of the issues you have.

My husband quit drinking from his hospital bed and is still not drinking alcohol, so I'm hoping your husband can manage it also.

My husband's liver doctor said that liver disease is a major muscle waster and it does take time to regain strength. My husband did develop a sweet tooth after - just an fyi. My husband only had ascites while in the hospital.

Is rehab an option for your husband? Or if not a rehab facility is home health care possible? We live in the US, so if you are elsewhere things may be different.

Wishing you both the very best,

Mary

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