My partner has had past problems with alcohol , she is only 39 and has liver cirrhosis , in November 2022 her decompensated, she seemed to get better and 2023 was a good year she was showing really good health. 2024 has been different in May she had to have her tummy drained , and from then on had problems with her pancreas which was treated and now being investigated again as she is having alot of problems with diarrhea.
Yesterday was saw the consultant and well having many doctors not really giving us a clear news as the liver function tests were improving. He told us the future is uncertain and a low survival rate over the next year, in certain words, it was hard to take in. My partner has only been away from alcohol 100 percent for the past 6 weeks, so i understand that the options are limited as he wouldn't talk about a transplant and i understand that, he also said 50% in her condition are not around a year later. I didn't mind him being honest, but i wondered if she keeps away and stays clean and can survive longer is there hope of a transplant ? i know others probably would be a prioirty as they haven't done anything to hurt there liver. Id like to hear if there is any hope ? no hope is killing me and i know false hope is also not good.
Also i was told that as much good nutrition as possible, my partner had/has an eating disorder, so we need to do better, can anyone give advice on what they have found potentially helps please ?
I'm reaching out here as feel lonely and scared while trying to be strong and positive for my partner.
Thank you for reading.
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Yorkshire82
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There is sort of good news - IF your partner can get sober and remain dedicated to an alcohol free future then there might come a point where she can progress to liver transplant assessment.
Assessment looks at the patients underlying liver condition, how poorly and needy for transplant they are and also whether they are fit enough to undergo the procedure and have a successful outcome.
Once on the list they allocated the available donor livers based on who is most in need of any matched liver - not what caused the condition in the first place.
Obviously your partner has some issues which need addressing - an eating disorder and the dependance on alcohol. I guess there is something which has triggered these issues and she might need to seek some medical/mental health support to deal with what has caused her to have these issues.
Part of the transplant assessment does involve psychology to make sure a patient is able to cope with the many stresses and strains of the wait for transplant and the raft of emotional symptoms which come with the wait and recovery - the medications for anti-rejection (particularly the high dose of steroids) cause all manner of mood swings, emotional problems etc. plus you have the potential for survivor guilt and more. During assessment they would examine all this to make sure she was emotionally strong enough and able to cope without the former crutch of alcohol.
In the past they used to say a patient HAD to have a proven 6 month period of abstinence before being put forward for assessment but this did change and the new criterion can be viewed at:- bts.org.uk/wp-content/uploa...
Your partner needs to get some help with remaining alcohol free, help to address the eating disorder and then some specialist dietary advice from a liver dietician. Part of the transplant assessment is a physical examination of the patients nutritional state - it can involve having to put on a 'reserve' of weight to counteract weightloss through illness and hospital stays.
My hubby had to be naso gastric fed even though he was the right weight for his height he also had severe muscle wastage - we had intensive input from dietician team and diabetes team (pancreas issues and diabetes are fairly common knock on effects of cirrhosis and many people also develop diabetes post op.)
There is a lot to take in but the door is not yet closed. If your partner can remain alcohol free and seek the above help for her issues then you can ask for referral to a liver transplant centre and they will decide if and when to progress to assessment. Only after assessment can the door on transplant be closed altogether but ongoing or recent alcohol use will always be a contraindicator that won't even get you to assessment.
Sorry it's not all sweetness and roses but if she wants it she is going to have to work for it.
Thank you for replying , I felt very alone this morning and confused. The information you have given is so helpful , it gives hope if we fight and try and correct the mistakes , I never wanted no hope or false hope , something to try and work to , I know there are no guarantees.
I’m hoping though that the consultant can make her more comfortable , he has asked for a stool sample to check on pancreas which only started causing issues in July. Hopefully to give some enzymes to help with digestion , which would help quality of life.
On the note of asking to be referred for a transplant I guess I have to wait some months and prove that 100 percent no more alcohol and that she is putting in the effort to get to a fighting weight. We have a referral for the dietician.
Hello,I just want to say you are absolutely not alone, although I know how lonely this journey can feel sometimes.
You aren't without hope. Hopefully your Partner realises the gravity of the situation and this gives her the strength, fight and courage to deal with her problems. You must keep some hope alive because this will give you the strength to help her through.
Thank you for your message, it really helps to hear from others, i was feeling so lonely and scared for my partner . I know we need luck and my partner needs to put hard work in to but its good to hear there is hope.
My partner understands the consequences of not fighting i believe, i wish i could do it for her, but i will stay strong and the words on here have helped me. This morning i was just in tears and frightened and well hiding that side from my partner. I am not normally this way either, she is my world.
I understand. Liver Disease is a journey.....its perfectly normal to have days like that. My husband didnt have adiction to fight thankfully although he did miss alcohol at first - but we have witnessed close friends battle with it and its a terrible illness to deal with.
I went tee total with my husband when he was given his shock diagnosis. He said I didnt need to but i believe as married we should share one anothers problems. Im so glad I did. We eventually had lots of fun developing new hobbies and have had so many happy times together that make up for all the sad and difficult days in some ways!
I was the same as your partner my bloods were were high and i went yellow but i carried on drinking until i went yellow again they told me I would not last long I still did not believe them but I decided to stop drinking for a year. After a few months of it my bloods and my yellow skin still did not go I was in serious trouble after a year they never give me a time on how long I be around but said i die without a transplant i was in shock, but they put me forward for assessment even though mine was because of drink i passed it had transplant 5 months later quite quick really i was really ill, that was 11 months ago i never felt so good in al my life so if transplant is offered take it its not that bad as what you think it is i was out of hospital in a week now l got a new whole life ahead of me only 51 now so i got many years to look forward to now good luck Lon
What you put is really encouraging , i am really happy for you too that you're doing good and got everything ahead of you .
The consultant when we were there, yeasterday, didn't want to talk at all about the possibility , i understood partly as my partner had only been not drinking 100 percent for about 3 weeks, what he said felt brutal but in away he has to tell the truth or give a reality check, he said 50% with the bloods my partner was showing wouldn't be around in time.
What the bloods are now l know there high but they can come down fast as long as the drink has stopped lot of people on here have been in the same place as your partner but once they stopped the drink alot of them turn there life around they still got cirrhosis but they will die with it not of it, a nice heathy diet exercise no drink your bloods will go down, some people on here are still living now years after after being in a position like your partner is now, just make sure no more drink thats where i went wrong.
Bless you. You have done the right thing in reaching out. The lovely Members on here will give you the best advice although you must continue to speak with the Hepatology team.
Many of us, myself included, are here because of alcohol problems. So your Partner is definitely not alone. The fist thing she must address is the alcohol. She must remain abstinent and she will have a good chance of a decent life. I speak from experience and have been abstinent over 12 years. Without a liver transplant too. She can do it. Alcohol is poison to people like us
Tell her to seek help. AA. Counselling. Whatever she may need. But please never give up hope. There is always hope. Show her this Forum and encourage her to read the answers. Plus use the search button.
I guess with your Forum name you are from Yorkshire, so from one Yorkshire person to another, tomorrow is another day towards abstinence
Thank you for your message, yes correct speaking to another yokshireman, the hospital where my partner goes is in Derbyshire though.
She has been off drink for about 3 weeks and hope it can now be forever, as i can't bare too loose her. I'm hoping we have some luck with her health and some improvements can happen , as the consultant was extremely bleak what he said to us.
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
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Hey there, 39 is so young! A lot of good advice has been given already so I’ll just tell you a brief history. I to did not stop drinking after being diagnosed. It finally took the doctor telling me I was going to die if I didn’t stop. I was drained many times and almost died twice. It was a long and hard road to get to where I’m at currently; which is fully compensated, functioning better than before the diagnosis. Your liver is extremely resilient and wants to live; you just have to give it a chance. Fortitude, consistency and God got me through it. Tell your partner to fight if they want to live. Exercise, eat etc even if they don’t feel like it. There liver will respond. Going on 3 years now. I’ll pray for you.
Hi , thank you for your message, I am really to happy to hear that you've managed to get your liver back to compensated, it is really encouraging to hear that if we fight and my partner puts in the work keeping away from alcohol and a good diet there is hope.
Hello I am very sorry to hear about your situation it is such a difficult time for the ones that love them especially faced with resistance. The other replies are absolutely on point I can only add that the hub of any addiction or illness is to recognise it and get the right advice she will need help and understanding and sometimes you will not be able to help her directly but your love and support while she goes through this is something she will be thankful for, ultimatley the first step is to realise that she needs to give up alcohol completely now and as katie says remain dedicated to a future without it. There is always hope no matter how dark some days are but honestly it is her decision and her who has to take responsibility for her own health and future; you need and must look after yourself and easy though to say try not to worry you are never alone and it's very early days as you will see from both the replies and some of the posts on this forum there are so many positive, hopeful and heartwarming real life stories to prove anything and everything is possible.
Thank you for your message, i have been encouraged by the messages received to have hope after the appointment with the consultant i felt it was over and no hope left just little time.
I'm hoping she will stay away 100 percent , i know this is going to be a battle and a complete change in lifestyle, i will join her by doing so too.
I’m so sorry to read this - I really hope you are ok. You are not alone…this forum got me through some very difficult times and you’ve already had some fantastic advice. I have cirrhosis and had acute on chronic liver failure when I was first diagnosed. So very sick indeed. I stopped drinking completely - which is what your partner will have to do. I’m now recompensated and living normally. If she carries on with alcohol then the life expectancy her consultant described sounds typical. If she stops, then there is no knowing how the liver will respond and how well she could get. My consultant told me that the biggest predictor on how well someone will do is their abstinence and not their initial liver condition. He pointed me to research done at Southampton University which concluded that the biggest determinant to a good outcome was abstinence from alcohol at six months post discharge from hospital. So all is certainly not lost if she can manage to stop. I had to have help to do that and was supported by Turning Point for a while. I haven’t touched a drop in 3.5 years. She sounds like she may need some help too. Her GP or consultant team will be able to offer advice on local services. AA was not for me but the alcohol support worker that worked with me helped me work through things - I didn’t find it too difficult but I’m not sure it would have been so if it hadn’t been for him. I learnt coping techniques and went through a shift from alcohol to an addiction to milk (much healthier!) Now I don’t really need anything. Many on here have been through the same thing as me and come out the other side. So please don’t give up. Nutrition is important and a protein rich diet is essential. I can’t tell whether she is getting support for her eating disorder…speak to her GP and see if there’s any advice or referral they can make to a mental health specialist and a dietician to support her. Take care and keep posting.
Thank you for your message , we are waiting for a call back from the dietician , the go though prescribed forte juices to help boost calorie intake. She hasn’t drank for a few weeks now, I think help will be needed to not go back , the appointment we had this time hopefully is the turning point.
Hi from a fellow born and bred inhabitant of God's own county!First things first, I'm sure your partner knows that even one more drink could potentially kill her. There's some very good advice on here about seeking abstinence and mental health support. It's not about saying "I know I can't drink", your mind can interpret that as a prohibition or deprivation. She has to train her brain to see having a drink as something totally alien to her, to think "I don't WANT a drink and I will never have one, under any circumstances". Look into cognitive behavioural therapy, it's very effective at teaching you how to reprogramme your thoughts and responses to stimuli. You will wait up to 6 months on the NHS, given the urgency maybe consider private if you have the means to do so.
The excellent people here seem to have covered all the bases. I'll end with best wishes and hopes for both of you going forward, and a final thought. Don't hide your feelings from your partner, if you need to cry in front of her go ahead. That's not about making her feel bad, simply that you really need each other going forward. Talk lots, share feelings, worries and hopes, enjoy as much time together as you can, it will give you both strength and courage to face whatever may happen; and post here whenever and whatever you like, the lovely, honest people here got me through some incredibly hard times. There is always hope. Again, my heartfelt best wishes to you both.
Hiya , thank you for your message, what you say is very true i wish i could do it for her , she is very determined and has been drink free for some weeks now, i can imagine its very difficult and hope and pray she can stay free.
I was saddened to read your words. You are not alone this forum can be a big source of support for you and advice for your wife.
I’m in a similar situation with my husband (alcohol related cirrhosis) and he is drinking again….so that’s a current battle …..I’ll admit to having my head in the sand seeing him drink every glass and not knowing, but imaging the effect on the liver.
Try not to give up hope, reach out to people, ask for help for you and try to care for yourself as well. Sorry it’s not great advice, but I hope you find comfort in the words of others on this site.
Thank you for messaging me , i am finding the forum helping me , i am full of fear and anxiety .
I am also sorry for your situation , too , i wish you all the luck . I think at times i have had my head in the sand too , putting it to the back of my mind, when my partner drank i knew it wasn't right and wasn't in control.
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