This is my first time posting. I’m feeling very lost and overwhelmed as my dad has been diagnosed with a decompensated liver from alcohol misuse only a couple of weeks ago.
The consultant told us he could one day become compensated but it’s too early to tell. He is currently abiding to strict dietary requirements and abstaining from alcohol. I never saw my dad as an alcoholic, although I knew he liked to have a drink in the evenings. It’s a lot to come to terms with. He is so frail and his mobility is poor for a 69yr old. I’m so worried and I’m finding it hard to concentrate on anything. The medical publications online suggest he won’t have long to live. The consultant said he wouldn’t go down that road yet. I don’t know his meltz score. Anyone going through or has gone through anything similar?
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Southlondon1
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Hello there and welcome to the forum, sorry to hear about your Dad. Can I ask which symptoms he's experiencing which has led to the diagnosis of decompensated cirrhosis?
The BLT website has a very good page on cirrhosis and symptoms and information about living with cirrhosis.
It's not all doom and gloom if he can stick to his abstinence and follow dietary guideance he may be able to stabilize ............ I take it he is at home currently and not still in hospital? If that's the case then he's not too critically ill just now.
There are many forum members who have initially been found to have decompensated cirrhosis but have managed (through following all doctors orders) to recompensate and remain not too bad.
*My hubby (now 61) was diagnosed with non alcohol related decompensated cirrhosis back in April 2012 - he almost died from a massive variceal bleed. 10 years later he's still alive and kicking, ok not 100% fit and noticeably frail looking but he pushes himself and rides his bike a lot.
BLT page is more reliable than a lot of the Dr Google searches which are very much doom and gloom laden.
Thank you for your response; that’s incredibly reassuring to hear. Lots of medical publications seem dire so it’s refreshing to know this isn’t always the case. The British Liver Foundation info has been incredibly useful, I just couldn’t find anything much on the process of a decompensated liver, becoming compensated. The consultant has said this is a case by case basis and hard to predict which is why there’s probably not much on this.
My Father got Covid and was very ill from the infection. From this, his stomach got noticeably big, he was confused, yellow and looked very ill. I called the ambulance and they took him straight to A&E and he was in hospital for about two weeks. He is now home and really down because his independence has rapidly decreased. He hasn’t drank for about two months now and he reassures me that “he won’t do a George Best”. I want to find some sort of sobriety book that is written from an older male perspective but I can’t seem to find any.
It’s really hard seeing him so down and unable to do simple things like cooking dinner without having to sit down after 5 minutes. I hope this gets better because it’s really hard to witness.
I’m so glad to hear about your husband. Hopefully my dad can get to that stage. He also has large varices to contend with. Can anything be done about that?
Hi Southlondon1. This is my first time posting on here,just been a silent observer.
I was diagnosed in January as being decompensated.
Had an ascites drain and also have varices.
I was a functioning alcoholic. 2 bottles of wine daily for 30 years turned to a litre of vodka every 2 days 3 years ago.
I had never felt so unwell but was in complete denial. I am 54 years old and was also superfit, would walk for miles.
I ended up not having enough strength to even get out of the bath.
I have been abstinent now for 11 months and never felt better. In July I got the news that I am now compensated.which is only 7 months later.
My strength is probably back by about 80% and I got a new job in May where I have not had a day sick whereas I always took time off through hangovers.
My consultant said I will probably outlive her.
If your dad follows a healthy diet and cuts out all alcohol there really is no reason for him to not live a fulfilling life.
Honestly my family and friends are amazed that I stopped the drinking. There is help out there for him.The hospital will offer him support for alcohol dependence.
I do hope this gives you some hope and reassurance.
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)
Hello love. Welcome It is overwhelming isn't it,I was in just your dads shoes 4 years ago.....,there is hope ,im still here!!! I'm currently classed as compensated, but I'm not the same bloke I used to be,I have permanently looked slightly gaunt in the face. I still have varices, although only small,several lots were banded,due to them bursting and me vomiting copious amounts of blood, and being rushed in to hospital.....the most important thing is abstaining from the demon drink....as that was my issue as well..... so I've not taken any alcohol in nearly 4 years....its not been easy,but I've done it.
I also suffered with terrible ascites, that had to be drained, several times. Sorry it may sound all doom and gloom, but things have turned around. It takes time,and is a long slow road to becoming compensated again. I won't lie it has not been easy at all,the medical staff have been amazing. Its extremely early days for your dad,time and good nutrition, is whats needed. It is a great idea to phone the blt nurses, they are great..
Just realise given time,things can and do improve for alot of folk,hopefully your dad will be one of them.i wish him well in his recovery.
Thank you for this Chris. This actually made me well up. That’s wonderful news that everything has improved so much. Unfortunately my Dad has large varices, but I’m hoping they don’t bleed. What do we look out for as a family, apart from the obvious? Any tips on making him less depressed? There really aren’t any books that can be read from a personal perspective of someone suffering with Cirrhosis.
Love,whatever you do don't get to worked up about it,your dad needs you fit and well.as to regards the depression side of things,the reason I did drink was to mask everything, I didn't wish to face up to reality....and face things head on!!!. So I've had alot of quite hard going counciling, but has helped such alot. Would your dad read any of our posts on here,as this blt forum has been also such a big help....some great folk on here. You also feel that your not on your own.someone will always help you out if at all possible. I'm assuming your dads on various medication, I was put on a beta blocker,to help with the varices. I to was also malnourished, no muscle what so ever. I was given ensure plus protein shakes, to help build me back up. I now walk 2-3miles aday even in terrible weather ...but will say,my bloods have never settled to where they should be. I think the worst thing for myself, at the moment is the fatigue and tiredness....and that has never left me. If I do to much one day,the next day I'm shattered. Not sure if any of that helps,I can tend to go on abit,sorry if I have!! Please say to your dad to look forward. Take care love. Chris
Thank you for the insight. Yea, he is on various medications including Beta blockers. He also has laxatives and diuretics which mean he has limited control over his bowel/urine movements. It’s such an awful disease… I wish I could do more.
Could you direct your dad to soberdave. He's on Instagram but also has a book and podcast he's an older male, he's been through the wars and might be relatable for your dad
I posted an almost identical post to you back in May of this year when my 69yr old mother was rushed to hospital with alcohol induced hepatitis and we were told in A&E she was in a very bad way and might not make it. We then got the decompensated liver cirrhosis diagnosis. Again I wouldn’t class her as an alcoholic but a heavy drinker. She was discharged 3 weeks later very frail with poor mobility and I was terrified as to what the future held.
Fast forward to now and the difference is remarkable. She is eating well, built up her strength & mobility and she lives a fairly normal life on her own. Mows her own lawn does the shopping, and looks after my daughter for a few hours each week where she takes her to rhyme time at the library. She currently has no symptoms (jaundice, oedema, ascites) Almost to the point I forget that she has this diagnosis.
She stopped drinking for 3 months but I’m pretty certain she has started drinking again albeit much less quantity than before.
I think she may have become compensated as she has no current symptoms but a fibroscan she had a few weeks ago came back with an F4 fibrosis result so it is a case that the damage has already been done. She has a liver consultant appt on 30th December.
I’m not sure what the future holds and I know how quickly it can all change but my point to you is there is hope; abstinence from alcohol is key, good diet & nutrition, exercise etc. She is living a normal life now and I’m just trying to focus on the time we spend together and making memories and taking each day as it comes. I spoke to the liver trust helpline and had some counselling which was a huge help. I never thought back in May that we would be where we are now, as was told some people don’t live for 3 months.
Sending lots of strength to you at this difficult time. Try and look for the positives. There is hope. My inbox is always open
It has been my humble opinion that many of the web sites regarding very important issues such as your father’s really paint an extreme picture. The doctors who deal with liver issues seem to feel that there are things to be done before you just give up. I can’t tell you how I have clung onto their words. I’ve been told by people in the know (my daughters!) don’t read advice on the internet! Do I still do it? Yes. But I always defer to what my doctor tells me. They have ideas. They give me hope. I hope you can listen to your doctor first. Don’t be scared by websites. Yes, I have gotten scared, too. I have NASH. It has improved a lot. I have been lucky. I neither drank nor smoked and live a pretty decent lifestyle. But like your father, here I am. It doesn’t sound like your father was a heavy drinker. But something has upset his liver. Weight gain has done it for me, I think. Keep up those lifestyle changes for your dad! He can improve with dedication! Praise him often! When he goes to compensated, have an alcohol free small celebration! Keep posting!
I am sorry to hear about your Dad, it can be a very scary time for you all.
Make sure he listens to his team and consultant, it’s true he could go back to been compensated, however he needs to remain alcohol free and be strict with his diet, low salt etc, even then it’s not always possible to go back to compensated it depends on how much damage has been done to the liver.
People don’t have to be alcoholic’s to have issues caused by alcohol, some people just like to have a “drink” and many people just don’t realise the damage that can be caused.
Keep the faith for a good outcome. Use this time to do what you Father wants to do. If he is not a follower of Jesus and try to get him prepared to go to Heaven if the outcome is not good.
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Newbie here - supporting my dad through Cirrhosis
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