Decompensated liver cirhosis with acites

[19625966]

Was in hospital may 24 with stomach pain and slight jaundice had to have ascetic drain it turned out I have decompensated liver cirhosis with moderate ascites, on discharge they have given me around 2 years to live no hope of liver transplant i am a year into that body aches all the time get tired easily .All I'm doing is managing situation with my liver pack,I am quite frail not eating properly as mostly not hungry although do have fluids

[lonmallin50]

Sorry to hear your story, why cant you have a transplant they must be a reason l had decompensated liver disease through drinking and they offered me a transplant and l got one few months later. what is the cause of your liver disease

[19625966 in reply to lonmallin50]

Alcohol is the culprit, apparently they don't think my body would be able to cope with a transplant also the time factor would not be on my side.

[19625966 in reply to 19625966]

Other than what I've said I really don't know ,as far as I know i sillhave some ascites also HE moderate getting muddled and forgetful tired a lot etc but seriously at the moment no chance of a transplant i suppose they don't expect me to make it I have asked a few times hoping for a different awnser .the good thing is I've come to accept this

[lonmallin50 in reply to 19625966]

If your liver is bad and your not going to live that long l dont know why they would not put you forward for transplant your still young still to have one

[BritishLiverTrust14 Moderator]

Dear 19625966,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday 9am to 4pm on 0800 652 7330 excluding bank holidays.

We also facilitate a range of virtual support groups for people in the UK living with a liver condition (and their families and carers). If you would find it helpful to speak to others with shared experience, you can register to join a group here:

britishlivertrust.org.uk/vi...

Best wishes,

British Liver Trust

[AyrshireK]

The 2 year thing I would ignore, it doesn't have to be a count down but it does demand you try to help yourself too.

Your nutrition is essential, if you can't manage food then ask about prescribed supplements which can be full nutrition. Towards my hubbies transplant last year he could no longer eat nor tolerate the n/g food tube he'd had in for 4 months so all his calories came via supplements.

Moderate exercise helps with fatigue (seems contradictory I know).

I take it you've stopped drinking now? Ceasing alcohol will reduce disease escalation and give liver a time to heal.

Sobriety is key and if you did manage to build yourself up who knows t/p could become a possibility.

We've had forum members far more poorly than you manage to turn lives around leading to t/p or indeed negating need for t/p.

My hubby was first diagnosed with decompensated cirrhosis in 2012 - it stabilized and recompensated for several years until it failed again end of '23 into '24 when he did get transplanted. We were never told any life expectancy and hubby was determined no to give in to the illness and did all in his power to live the best life he could.

Katie

[absolutenovice in reply to AyrshireK]

I couldn't agree with AyrshireK more. I was given the same news as you, well, 2 years ago. Today I feel better than I've felt in years, but have dodged the transplant. The liver can still fail, of course, but I feel I've quite a few years left in me! I am the same age as you btw...

Rob

[DaveQ67]

I’m very sorry to hear about your diagnosis and situation.

I was diagnosed with pretty much the same outlook, my ascites were minor though. Along with a minor varices.

The mental battle is a tough one, I found a lot of self anger as mine too was due to alcohol being the main culprit.

Can I ask you…. Other than stopping drinking have you been able to make any changes ? I only ask as I was determined to get to my daughter’s 20th, she was 7 at the time. It seemed impossible and may very well not be achievable, however with the changes made and a total switch in mentality my diagnosis keeps improving.

I was struggling with pain, insomnia, fatigue the first 4-5 months especially. At times it seemed like a lost cause tbh.

It is crippling so I know where you are at this time.

[19625966 in reply to DaveQ67]

I'm sorry but other than stopping drinking which is a year now no changes not sure what else to do

[DaveQ67 in reply to 19625966]

Firstly well done on giving the drink up, it’s not easy! I can only tell you what I did and continue to do. If my experience in the last 22 months is anything to go by, 1 size does not fit all. And more importantly absolutely nobody including medical professionals know what the diagnosis can throw up or change too.

I done alot of research into diet, both what we are told in hospital and also alternative avenues. I found a balance inbetween.

I found exercise has been the biggest benefit and catalyst for improvement. Along with abstinence of course.

To give you a glimpse where I was at, I couldn’t get up 3 steps or walk 100 meters when leaving hospital. The first 4 months were the worst physically and mentally.

I used to say complacency was the enemy regarding alcohol, now I say it about mindset! Every now and then the sense of hopelessness creeps in and the deep thoughts of what’s going on inside my body and the damage I’ve done. I look at 12 months ago and where I was, it snaps me back to trying to improve little things which all add up.

The mental battle is a tough one and can keep you down. Hopefully you can get into a place where transplant is an option.

[Breakfastbabe]

I am so sorry to hear about your diagnosis. My husband was diagnosed with cirrhosis in 2019 due to alcohol. In 2023 he went for his annual check up and was told he was decompensated and had Peritonitis. He had his ascites drained and has bi-monthly drains now. He has been told he is too old and frail for a transplant but the hepatology team refused to give him a timeline as they said it is impossible to predict with alcohol related liver disease. Although the liver is permanently damaged it can stabilise with abstention, the right medication and a good diet and exercise. I agree with a previous post that state of mind is also important although perhaps the hardest to control.My husband is now teetotal and makes himself eat even when he doesn't want to. We go out and do something nice every day even if it is just a little walk as he can't exercise much. We get away for little holidays in our motorhome and I believe this is what keeps my husband positive and focused on living. There are so many positive stories on here so I would say, ignore the death sentence and focus on living. I hope you can find that positivity and know that everyone on here is supporting you. Take care.

[evelyn1]

You should be on the transplant list at this stage. Do you mind sharing why you are not eligible,totally understand if that's something you don't want to divulge x

[Dogbot]

Hi first thing good work with the alcohol Keep it up 👍, I will try to keep my story short because I know concentrating is so hard . Liver stopped 2003 alcohol and you wouldn’t believe what I was drinking, abstained when in hospital. The doctor that saw me when I was rushed in put me on a lot of drips and came back in the morning and said oh well you’re still alive, so he didn’t think I would get through the night . Now I had a lot of hospital stays and a few times they had to save my life with a lot of work but I’m here had my t/p two years ago when I was 68 , that’s all from a wheelchair in 2004. When I was in hospital just before my t/p I spent 3 months in Kings College hospital with a lot of things going wrong and the doctors said I pulled through not only because of the things they did but because of my attitude, so keep up with positive thoughts and had work with the eating and fitness.

All the best 👍

Stay safe All

Dogbot 🐶🌈Dave

[19625966 in reply to Dogbot]

Thanks trying to stay positive

[2022minks]

Hi there, sorry to hear your diagnosis, it is alot to take in for you. if you have been off alcohol 100% for nearly a year you may have improved your liver in that it isn't getting any worse so please when you next see your consultant see if there is any improvements as there have been some amazing turn around on here and at 62 you should be viable to join the list if you have shown you are off alcohol, so please keep fighting all the way and send you much love xx

I lost my mum to Nash, she was diagnosed at 73 years at decompensated and not eligible for transplant she wasn't given a timeline of how long she had but from prediction tables estimated around 2 years, she survived 5 years.

If I could offer you any advice it would be to get all your affairs in order whilst you are in good health, get all the difficult discussions discussed and then try and live each day, make memories with family and friends. If you need help in counselling in coming to terms with a diagnosis then your consultant can get you support and meet the pallative team they are not just there for someone's final days they help support patients with limited life and long term illnesses and do have community activities that can help. We are all here for you and are alongside you for support xx

[19625966 in reply to 2022minks]

Thank you for the nice reply I see the palliative care people tomorrow that always makes me feel better very good people

[2022minks in reply to 19625966]

They are so lovely, I hope you are not dealing with this on your own and you have family or friend support around you xx