Husband with Cirrhosis

[Hol1Day01]

Hi all. I’m new to this group and after some help. My husband is in alcoholic recently diagnosed with Cirrhosis after an internal bleed, bruising, fatigue and spider veins on his upper body. He’s an alcoholic. He’s in total denial about it all and is still drinking every day (about 2 cans of Stella) and saying I should be pleased he’s reduced his drinking. He also doesn’t believe he has Cirrhosis. So I’m just very confused about what the NHS does from here. Are we just on our own now or should I be expecting some kind of follow up? Ive read a lot about different stages..I have no idea what stage he is at. I read that there are all these other side effects but no idea how he gets support for them. Plus I was hoping with some kind of follow up he would start to take this seriously!!! Does anyone have any idea what I should be expecting? And am I right that one beer is one beer too much!!! He was told he would be dead in 2 years if he didn’t stop.

[pussycat66]

My husband has also recently been diagnosed with cirrhosis. He too is still drinking like he is in denial. His consultant requested a fibroscan first and he has just had an ultrasound. They are going to ask him to go for an MRI next which we are still waiting for. He has bloating, spider veins. appetite loss. white nails and erectile dysfunction. I am scared for him and scared as to what I am going to have to witness when he deteriorates. . My late husband had lymphoma and I nursed him for 2 years as he fought hard to live. He passed away. Now I am in this situation with my new husband, who wont try to stop drinking. He says he doesnt need help he can do it himself, but he cant!! So I feel for you as my situation is similar.

[Aotea2012]

I was diagnosed with cirrhosis about 2.5 years ago. Mine was caused by alcohol. I was in hospital, seriously ill, when diagnosed. I nearly didn’t make it home alive. I gave up alcohol the day I was admitted and have recovered to a point where my varices are gone, my bloods are normal, I take no medication and feel fitter than I have in years. Would I touch alcohol again? Not a snowballs chance in hell… Alcohol and cirrhosis are a truly awful combination. That said putting alcohol in the bin is a tough thing to do and I had support from Turning Point to get rid of the bottle. So he will need support - if he changes his lifestyle he has every chance of living a normal (or as near normal) life. If he carries on then the slope is pretty slippery and the landing point is painful. I decided to stop beforeI hit the bottom…but it was my choice. For years people had told me to stop and I ignored them. It wasn’t till I nearly died that I realised I wanted to live and that if that was to be the case then alcohol had to be a thing of the past. He needs support - but it has to be his decision. His consultant/GP will be able to refer but he needs to want to end his relationship with alcohol.

[Hol1Day01 in reply to Aotea2012]

It sounds like you have been on such a tough journey and have had huge strength to get yourself into such a positive place. I hoped that all of these experiences would make my husband choose to do the same and hopefully one day he will.

[Rshc]

Am sorry you are going through this, your head must be in a spin. My partner was diagnosed Christmas Day 2021 with ARLD - advanced stage and decompensated (meaning he was having lots of symptoms). He remained in hospital for 3 weeks (and had 2 subsequent readmissions). He was very poorly and at that stage I wasn't sure if there was any hope as information from the hospital was very much about treating how he was in the moment and not looking forward. From his admission on the 23.12.21 he underwent a medical detox which took 5 days and he hasn't drank alcohol since. I would say giving up alone would be hard going, am sure people manage it but for him having that support, plus being in hospital for 3 weeks and additionally having a very bad near death scare was enough to stop him drinking. Giving up 'cold turkey' with no medical supervision can be dangerous.

Since then he has been listed for transplant but now off the list as his bloods are near normal, his liver whilst he still has cirrhosis is functioning 'normally' and he is re compensated. He has been told that there is no reason not to hope for a long and (hopefully) happy life. He has had regular follow ups with a consultant and a liver nurse, regular bloods and CT scans (people with cirrhosis have higher risk of liver cancer hence regular scans) plus endoscopy 2 x a year to check for varices. If your partner has had internal bleeding it makes me think he may have varices so he would need to have this checked regularly to avoid future bleeds which can be fatal.

I know you know this already but continuing to drink is to continue on a path that doesn't lead anywhere good. He is putting additional strain on an already very compromised liver with every drink. You may need to push for support but it is out there. It might be that it is just too much for him to do alone, hard I know if he is in denial.

Best of luck and this is a great place for support, I am so grateful that I found this site in my darkest hour

[Rshc]

sorry the other thing to add is that I know sometimes people believe that 'whats the point' if they have a cirrhosis diagnosis. That they cannot be cured and so they may as well enjoy the time left. A death from cirrhosis isn't a pleasant one and even with the very worst diagnosis of end stage liver disease you can pull yourself back from the brink to live a near normal life (but a life without alcohol).

[Hol1Day01 in reply to Rshc]

Wow thank you so much for such a detailed response. My husband sounds much like yours and yes it was varicies but been told now it’s a check up every 12 months…and feels like that’s it. My husband went through a medical detox when in hospital as he couldn’t just stop (tried that before and had a seizure that was also nearly fatal) but he was out of hospital after a week and slowly he’s introduced beer back into his daily routine claiming that this is fine compared to the 4 beers and 3 bottles of wine he was drinking daily before. I’m just so lost as I’m told to stop interfering but feel the weight of responsibility but with no real facts or understanding of how dangerous it is to drink. Sounds like the only safe option is no drink though!!!

[Rshc in reply to Hol1Day01]

It really is a case of no drink with cirrhosis and the other thing to keep in mind is that if he should need one, he will only be considered for liver transplant if he has been completely sober for 6 months - if it gets to that point wouldn't he want to have that option open to him. He has done amazingly well to cut down to that degree but as long as he continues to drink anything not only is he continuing to damage his poor poorly liver but it is also a much easier path to 3 beers from 2 beers and for it to start to creep up, from no drink I believe is a bigger step. My partner just had a continuation of care once he was discharged, at the start he was being seen every 2 weeks by a consultant so I am not sure who I would contact in your position. Do you have a consultant you could speak to to see if they can offer any more support?

[Oldbits]

Hi, welcome. Firstly you're not alone there a lot of us with similar tales of loved partners in the same place. My husband was in denial too, sadly there isn't enough that you can say or do to change them. He has to want to stop drinking. Good that he has reduced his intake, if he drank a lot it's not good to stop completely, but he does need to stop eventually, before the damage isn't reversible, or partially reversible. It sounds as if he is on their radar but if he hasnt given permission for you to be involved in his treatment you wont know whats going on (mine didn't to start with as he was in total denial and pretend all was ok because he was scared and didnt attend appointments) . But if his diagnosis was in hospital his gp will soon know and scans, bloods etc will be sorted and a referral to a consultant. There will be medications to help with side effects etc but he has to comply with the doctors and stop drinking. There is a lot of help with this if you ask. Tricky if in denial. Things can get better but it's a lot of hard work. My husband said "When you're in the bottom of a hole its easier to stay there than climb out", he too was given 18 months 2 years to live but now living with cirrhosis and told he will die with it not from it. Try ringing the livertrust helpline. Take care of you too.

[Hol1Day01 in reply to Oldbits]

Thank you. Good to know I’m not on my own. I wonder if I’m in denial too and want it to be ok for him to just have a beer as I know life is going to be really tough for him if that’s not possible. I hope the doctors will get in touch soon so that they can help get this message home and help me know how to navigate all of this!

[Oldbits in reply to Hol1Day01]

I think I was in shock when I found out about my husband, I thought all was well (or just ignored the warning signs) you have plans for the future and suddenly they've gone. It is very hard for them to stop and change their lives, its a bumpy ride for everyone around them too. We had to change our diet and lifestyle to support him when he finally admitted he needed help. But believe me watching someone become very ill with decompensated cirrhosis is horrible. I actually had a word with my husbands gp, said I was worried about him and told them what had been going on. Things moved along pretty quick after that but he hadnt been in hospital like your husband. Maybe try that if you feel things are moving to slowly and you need some support and have question to ask. He may well be scared, being told you're that ill made my husband start to have serious anxiety and denial was the easy choice. Alcohol was his go to when he was stressed, so a vicious circle. Your hubbie has done so well cutting back, and he probably knows he has to stop, when hes ready he will. There is a lot of info on the liver trust website that may help, about diet and questions to ask when you get the chance to do so.

[wp69]

Hi , very heavy ex drinker here , hospitalised twice , just out of hospital 3 weeks ago with alcoholic hepatitis , send me a message if you want a chat , im off the drink and always willing to discuss my situation , regards , Will.