After having blood tests, gastroscopy, CT scan and fibroscan, my partner has been told he has cirrhosis with advanced fibrosis (no scores given). He has an enlarged liver and spleen, portal hypertensive gastropathy and some fluid in his stomach - no varices yet. He has been a heavy drinker for a number of years now and these investigations started after routine blood tests flagged some issues with blood results. He feels well in himself, so had no concerns.
When giving my partner the results of all of the tests the consultant was very upbeat - he told him that as long as he makes positive changes (stop drinking, lose weight and exercise) then it doesn’t have to result in a shorter life expectancy.
Unfortunately my partner has read this as it’s nothing to worry about and I don’t think he has taken it seriously at all. He tells me he has every intention of stopping drinking (and I know he believes this) - however, he still is! He said that it can’t be that serious or the consultant would have given him a stern talking to.
Has anyone else had this experience? I know the decision to stop drinking has to come from my partner, but it is heartbreaking knowing that he is just continuing to damage an already damaged liver.
Sorry for the long post.
Any thoughts or comments would be really appreciated.
Thanks x
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OfftowalktheCamino
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First as I know you cannot have liver cirrhosis without fibrosis so the part after "with" is somekind misleading."has been told he has cirrhosis with advanced fibrosis (no scores given)"
I think he should ask if he has compensated or decompensated cirrhosis. Anyway he should follow - stop drinking, lose weight and exercise.
Liver cirrhosis is a serious disease but manageable if taking seriously which is essential. Good luck.
I am sure the consultant meant well and didn't want to alarm him but you need to find out what his Kpa and CAP scores are on a fibroscan and also get the stage of cirrhosis determined using one or more of the measures available as this may reinforce the seriousness to him. These 'scores' are calculated from blood test results. There is Child-Pugh scale, MELD and UKELD. You might also get him to look at information on END STAGE LIVER DISEASE - which is another term for cirrhosis. He sounds to be in denial about drinking and I know I found it hard to give up and miss it occasionally 18 months on. Initially my main motivation was to stay alive as long as possible for my wife and two wonderful daughters but the health benefits I have felt since giving up have taken over and despite compensated cirrhosis with a MELD of 6 UKELD 48 and Child/Pugh A, I am fitter than I have been for 25 years. Good lick to you both going forward.
Thank you for your message. I did push for this info at my husband’s last appt - but the consultant didn’t want to give the scores. He said all that matters is that they show he has cirrhosis - but didn’t explain further. It has been very frustrating.
I think you can challenge this if your husband isn't taking things seriously but there are calculators that you use if you have the blood results for Creatinine, Sodium, Billirubin and INR (a standardised measure of blood clotting time exptessed as between 0.8 and 1.2) I tried to post the links on here once but they were removed by the moderators as not allowed under forum rules. Good luck
It is everything to worry about. He has had a definitive diagnosis. If he continues to drink, even small amounts, he will continue to damage his already diseased liver and he will end up extremely ill. Life expectancy dramatically shortened. I think you should show him some of the stories on this website and make him take note. Good luck
Thank you. That’s a good idea. At present he is just sticking his head in the sand! I have tried giving him info, but I think he thinks I am just being over dramatic. I’m going to his next appt with him, so maybe I can ask the consultant to explain the risks if he continues to drink. He might take more notice of him.
Hello! Sometimes Drs do use a lighter way to break the news - and its not all doom and gloom from there point of view - if he takes reasonable steps now to stop the deterioration. My husband was initially told he had cirrhosis which was "caught early stage" so we thought it was nothing to worry about too much. He had already stopped drinking prior to diagnosis, so took this as a signal he could carry on as usual, working himself to the bone. He had been told he had a varice and portal hypertension and we had NO idea what this was. He actually stopped taking the blood pressure meds for it because he thought they were making him feel ill. Then promptly suffered a life threatening bleed and our whole lives came crashing down as he was swiftly moved into decompensated territory and listed for transplant. Its been a long 5+year journey to actual transplant - so my advice to you both would be to embrace the lifestyle changes now while its not too late. 🤗Wishing you both all the best,
Thank you for your reply. That must have been a huge shock for you both. I really do hope my partner can make positive changes. Wishing you all the best too.
There are some really good posts on here from people who have partners, or they themselves, that have continued to drink after diagnosis. Many with some pretty horrific gory details. It may be worth reading some of those to him to demonstrate where he is heading if he doesn't follow the advice he's been given. At the moment he still has time to dodge the bullet. If he waits much longer he won't. By the time a doctor tells him his results in a more stern and down beat manner it may be too late.
I advise speaking with the BLT nurses, and completely stop drinking alcohol Things will only get worse cirrhosis, ascites, splenogamaly, varices, reduced appetite jaundice, portal hypertension, lethargy .
Tough words, I had a very good consultant who didn't hold back. Once they realised I was taking it seriously a plan of action was made.
That’s really positive news. I’ve read lots of stories of people who have taken advice on board, made changes and had positive outcomes. He just needs to get his head around it and start making those changes.
I am sorry for your news. My husband was diagnosed with sclerosis of the liver 7years ago and advised not to drink. He gave up for 3 months , lost weight, exercised and his health improved greatly. He read things on the Internet and saw that with drinking he probably had 10 to15 years ahead of him and without 20 to 25! He said he'd prefer the 10 to 15 and be happy, rather than the latter and be miserable. Apparently he spoke with one of the liver Dr's said the occasional glass would be fine? This quickly went back to his normal drinking of 1 to 2 bottles of wine a day.He had 6 monthly checks and stayed stable until March this year and now has decompensated liver and chronic kidney disease and ascites. We retired last year to travel we cannot now do anything much. He's In Hospital having a drain every 2 weeks. There is no chance of a transplant because his body wouldn't cope amongst other things. Can hardly walk any distance, doesn't eat and is thoroughly miserable. He had is 70th birthday last month and probably won't see his 71st.
Certainly not how we envisaged retirement. Please show your husband this, its not just him that will suffer its all his loved ones as well. We have only just started this journey and its not a nice one. I wish you luck and hope that your husband will read this and stop drinking. Best wishes
I’m sorry to hear about your husband. What a shame he was given the advice that drinking occasionally would be fine! Thank you for your message - I will definately show my husband.
your man has a decision. He’s at a cross roads in life.
My diagnosis was similar, but with 1 small varice.
It’s very simple, he may not feel like he’s ready to stop drinking. I wasn’t. You never are if addicted. The fact he is still drinking regardless if he convinces you otherwise is is gripped with an addiction. Being given this news and continuing is the only evidence he needs.
This is difficult to adjust too. But it can be done.
I purely done it as I didn’t want to be a source of embarrassment for my young kids. Knowing I did this to myself and didn’t stop. It’s only after changing things and getting my health back ( albeit now compensated cirrhosis) I realise how much better life is.
Support from AA is very helpful. I didn’t feel like I needed it to stop after hearing my diagnosis.
I know people who just said to hell with it, I’m dead now anyway. You never know what’s round the corner medically.
Definitely show him this page and have a read through some of it.
Thank you for message which has hit the nail on the head - he def has an addiction and it’s one he’s been battling for some time. He isn’t interested in AA as he is worried he will see someone he knows. He has tried counseling for his addiction - but prob only went to appease me and didn’t seem able to use the help & advice he was given. I know it’s got to come from him.
I will show him your post and the other ones I’ve received and hope it helps. Thanks again
No problem, I’ve been there. I had no idea how bad it was till I stopped.
I too done counciling, done purely to apease others. AA is anonymous, nothing to be ashamed of. Doctors to lawyers attend.
He has an illness, the stigma created by people stops others getting help. Whether he chooses to tell people is up to him. It may open his eyes and relate to others.
I am sorry to hear about your situation. Perhaps your husband is an alcoholic, I myself a recovered Alcoholic, it took a lot of suffering to realize that and take action. There is something about alcoholics we simply delusional, far away from reality. Alcoholics have to lose a lot before realizing they have to stop. There is Alan-on for family and friends that have alcoholic spouses/parents…..perhaps they can help you find peace. They can share how they dealt with their folks. Good luck
As others have said….he must stop drinking. He has every chance of a normal life expectancy if he makes this important lifestyle choice. If he doesn’t…then it’s a painful future. I was in the same place (if not a lot worse because I’d become ill) three years ago. I stopped drinking and now feel really well. The 2 minor varices I had at diagnosis are gone. My bloods are normal and my scans clear of any nasties. I consider myself very lucky and have grasped this second chance of life with both hands, without one holding a wine glass! 😁
I’m glad to hear you’re feeling really well now. I’m holding on to the hope that he will get his head round it and stop drinking 🤞Thank you for your message.
My husband was told virtually the same thing after the same tests your husband had. He also has a genetic blood condition that further impacts his liver.
The initial investigations started because he had what we now understand was pancreatitis in December 2022. He was a heavy drinker for about 15-20 years and in the 6 months before he got unwell a very very heavy drinker (2-3 bottles of wine a night) following the death of his father. He is 44, we have 2 teenagers, and he has a disease that most people associate with people in their sixties.
He stopped drinking immediately. He was later told he has compensated cirrhosis but the blood condition maked him highly susceptible to liver damage. At an appointment with the liver nurse she advised if he began drinking again he would have 6 months to live.
You've has some great advice here. Some of the things your husband has been told are weird. Fibrosis is where there is damage but it is still repairable to a degree, cirrhosis is where the liver can no longer repair itself. Sorry to be really blunt with you but continuing to drink with cirrhosis is a death wish. Your husband needs to make changes now, because from what he's been told, his liver is ringing the alarm bells that it is failing to perform all 500 of its functions.
This forum is truly a wealth of information and stories and reminders of why we work so hard to keep our livers healthy, because liver disease is slow and brutal. But there is hope. With the right changes, your husband can improve his health dramatically in a short time.
Thank you for your reply. I’ve really found this forum so helpful and have used the helpline to talk to the liver nurses. I can’t talk to family and friends as he doesn’t want anyone to know and I respect his wishes. It can feel very isolating. Hopefully he will make the changes he needs.
A.A has groups online now if he,s worried about being recognised. I am in the same boat as hubby and happy to talk privately if either of you want to. There are many other issues that can occur if he doesn't stop the drinking. Folk with cirrhosis have a higher chance of developing liver cancer for example. If he,s still drinking and goes downhill to the point of needing a transplant they will not even consider him unless he can prove ( they can tell via blood tests ) that he,s been sober for at least six months and that,s if he,s lucky enough to find a match with a suitable donor in the first place. Holidays abroad become impossible with advanced cirrhosis due to not being able to fly ( the liver is unable to cope with changes in cabin pressure) also he will find getting insured very difficult. These are just a few of the issues hubby could be facing if he continues to drink along with the more obvious that people mention, such as ascites, varicose veins etc. I know I was in the same boat as him, BUT, it doesn't have to be doom and gloom, he can turn it around, I did and I never thought I could give the alcohol up. I tried and failed, tried and failed miserably again, but, as the saying goes, " failure is not falling down, it,s about getting back up when you've fallen". It,s so worth it, and quite honestly he needs to do this for your sake too. Dying from liver failure is a bloody awful death have a look ( try and get him to watch) some videos on YouTube. You will also find some really inspiring people with channels talking about their journeys, how they have given up the drinking and stayed sober. Watching YouTube really helped me as I didn,t want to go to A.A either, so I found help there and of course there are the good folk here. You can message me anytime if you need to talk and i,'ll try my best to help. There are some good self help books on Amazon for example and other approaches to giving up ( depending on the amount hubby is drinking he may need professional help to quit) for example the Sinclair method. I just quit cold turkey from a litre of brandy or whisky per day, not the smartest move ever, I ended up in Hospital very sick. 😕 Sorry for rambling on so much, I hope you can get hubby watching a few videos and realise life can be so great despite a diagnosis of cirrhosis. I have been told I can now expect to live a normal lifespan and die " with" cirrhosis rather than "because" of cirrhosis. 🙂💚
Thank you for your message. It’s great to hear how well you’ve done and that you were able to turn your life around. That gives me hope. Your tips are really helpful - will def have a look and will also encourage my husband to. Thanks again for sharing 😊
Sounds like the Dr is just being matter of fact and not expressing strongly just how serious this is.He has been given the info in a calm and informative manor but he is ignoring them.
PHG is just as serious as having varices in the throat and IS a form of varices, many Dr would say its worse than having them in the throat and shows advanced portal hypertension.
As for fluid in his stomach (forgive me if I'm wrong) but isn't that ascites?
His "treatment" is clear, stop drinking, lose weight and exercise.
You’re right Roy. Fluid in his stomach showed up on one of the scans - but consultant said it wasn’t ascites? Didn’t seem worried about it. After 2 gastroscopy procedures he was told he didn’t have any varices and won’t need another tests for 3 years despite having been diagnosed with PHG, which he didn’t even explain. I looked it up on Google as I didn’t know what it was! It all seemed very unclear.
Despite everything we know he has cirrhosis and needs to stop drinking, lose weight and exercise. He’s been trying hard to lose weight and has lost 3 stone. Has also been doing a lot of walking and swimming. He just needs to STOP drinking 😩
I have had similar news in the last 6 months. The only difference is I am female and hardly drink at all I am 53 today
Initially I was very worried with the results from tests as they came in, my Fibroscan is very high.
The consultant explained every to me in my last appointment, saying if I ensured my fitness, nutrition and sleep were clean; following Mediterranean Type Diet and NO alcohol, I could have a normal life span.
I don’t think you are going to be told off for your reasons for being at this point, it is just that you now have are in a situation where you can maintain your health under guidelines.
I was told to give up alcohol; even though I rarely drink and thought that would be fine to continue.
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Can cirrhosis be reversed after 1 month of not drinking?
20 years of drinking and want to stop but don’t dare’nt get a liver test.!! 
After 4 years of keeping it a secret I told my partner the truth about my chronic cirrhosis 
I am confused...... again!
Had more blood tests and consultation with GP (family doctor), mostly better news I think
