Dad has stage 4 cirrhosis

[Lplplp14]

Hi everyone, I have recently found out my dad has stage 4 liver cirrhosis. He isn't eligle for a liver transplant the doctors said he wouldn't be a candidate ( I think this may be because he has COPD) . I'm just so heart broken and so is my Dad. I'm trying to understand what this means for him though.Can you live a decent life still with stage 4 cirrhosis, since he was admitted to hospital very poorly about 4 months ago . He had jaundice, high bilirubin, toxins in his body and confused . Since that day he's not drank or smoked as its scared him so much!

So now he's been told he needs to be healthy, no drink or smoking which I know he'll definitely do as he wants to live!

At the moment he's feeling OK out of hospital .

I live far away 24 hours on a plane and I am trying to keep my dad positive and help him get in a good way of thinking but you can he imagine he's so scared and depressed now.

So I think my question is what does this mean for his life , if he's got no symptoms right now and he's trying to be healthy does he have a good chance of living a good few years happy and pain free? One place I read stage 4 means 6months - 2 years another place I read says can be 10 years . I'm quite confused and I think my dad is too!

[AyrshireK]

He hasn't got stage 4 cirrhosis if he has no symptoms.

He does have stage 4 fibrosis which is cirrhosis but that isn't the same as stage 4 cirrhosis which is when the liver is decompensated and you'd be seeing serious signs of the liver failing.

Fibrosis goes from F0-F4, cirrhosis is then staged 1- 4.

Stage 1 cirrhosis - compensated - no varices, no ascites.

Stage 2 cirrhosis - compensated - varices, no ascites.

Stage 3 cirrhosis - decompensated - ascites, +/- varices.

Stage 4 cirrhosis - decompensated - bleeding, +/- ascites.

Don't go reading and researching any talk of life expectancies because NO ONE can predict that. Keeping the liver in compensated state is key. People can live long lives even with cirrhosis.

My hubby is 11 years into his life with the condition having initially ending up in HDU with a massive bleed (decompensated stage 4 symptom). 11 years later still here, living the best life he can and compensated now for many years.

Katie

[Lplplp14 in reply to AyrshireK]

Hi there, great to hear your husbands doing well this is really good to hear.

They did say stage 4 cirrhosis. He hasn't got ascites , bleeding or varices though which is why I'm confused. He is extremely tired and feeling week . I don't know much about varices though but I am sure I'd know if my dad had it.

I'm going to show him this about your hubby doing great as it will definitely give him hope and show him he can still have a good life ahead of him!

Thank you

[AyrshireK in reply to Lplplp14]

Some doctors mix the phrases fibrosis/cirrhosis which causes confusion - stage 4 fibrosis IS cirrhosis and is sometimes also called end stage liver disease which causes the panic to set in further BUT it's only end stage meaning the last stage of fibrosis not end of life.

Cirrhosis is then staged as per description above so full on Stage 4 cirrhosis is decompensated with bleeding varices with or without ascites - absence of these means he's not at Stage 4 cirrhosis.

Has Dad had an endoscopy/gastroscopy? That's a camera down his throat - they'd check if he had varices that way. My hubby had an initial massive bleed (7 burst varices) and up until that point we had no idea he had liver disease. He went on to have 42 varices banded - he's never had fluid build up/ascites. In 2014 he was assessed and listed for transplant but improved enough to be delisted after 10 months and has remained compensated since then - no further varices. Yes, he's tired, has a terrible sleep pattern, gets easily exhausted BUT lives his best life. He got into cycling in 2021 and has both manual bikes and an electric mountain bike - the latter of which he/we just had a month in the Cairngorm mountains cycling 380+ miles. So life with cirrhosis is possible.

We are off to Edinburgh this coming week for his latest check up with consultant and possibly his next endoscopy. He just gets scanned 6 monthly, bloods 6 monthly, a consultation whenever the NHS can find a slot and regular (annual or biennial) endoscopy. Hubby still has F4 Fibrosis/Cirrhosis but probably now Stage 1 (2 max) and not the Stage 4 he was on diagnosis in 2012.

Katie

[Lplplp14 in reply to AyrshireK]

He did tell me he's got an appointment soon which is a camera down his throat ( how he explained it) so that's what they must be checking. So was your husband told he has stage 4 cirrhosis at one point? Yes my dad's sleeping pattern is very bad , he's now on a trial with meds to see if it helps .

[Lplplp14 in reply to AyrshireK]

Sorry I have just re read the last part of your message , so your husband was at stage 4 but now the symptoms have stopped it can go back down? It's so confusing apologies if I'm making no sense!

[AyrshireK in reply to Lplplp14]

Yes, from stage 4 decompensated now stage 1 and compensated but still has F4/cirrhosis.

No question is a silly one, we were all new to this at one time. The BLT page on cirrhosis proved useful to me when hubby was first diagnosed. britishlivertrust.org.uk/in...

Katie

[lighthouse123 in reply to AyrshireK]

Katie, could just ask you, is your dad still showing some signs of cirrhosis. Like, saying chronic tiredness. Even though, your dad is doing well, is he showing any current symptoms like this?Thanks,

LH

[AyrshireK in reply to lighthouse123]

Hubby - not Dad - and yes he still has chronic fatigue, sleep disturbance and symptoms of minor HE. We saw his consultant yesterday and she says he's doing well but suggested a new prescription to help with the HE side of things (Lo-la) ... just depends on getting someone in our local health board to prescribe it.

Katie

[tracyliz in reply to Lplplp14]

Hi just reading about your Dad, the terminology is very confusing. I was intensive care,huge varices bleed, ascites which had to be drained twice,jaundic and told I wouldn't survive the night. Here I am 11 years later living a near normal life, a bit tired but I am now 64 and on my feet all day. The key to this is NO Alcohol, when you feel better, even after all these years, having a drink would probably kill you so I will never drink again and your Dad must do the same.

[Dreamleaver in reply to Lplplp14]

He can have stage 4 , compensated cirrhosis and no symptoms. It’s also possible to have symptoms, stop drinking, temporarily be relieved of symptoms and progress from compensated to decomprndated. When stage 4 this can happen in less than a year or up to 13 years. If the car said 4 years, sounds like things will progress fast as soon as his body can’t compensate for failing liver.

[J4ck1369]

Hi there. I don’t post much on here but felt the need to as you and your dad sound so worried. In May 2022 I was admitted to hospital in a very poor state, having felt ill for several months I had suddenly become very jaundiced. I was admitted and my bloods were very deranged and billirubin was 358 and had severe ascites. My prognosis was very poor and (I later found out)thatI was only given 50% chance of survival. I stopped drinking immediately ( never smoked) although it helped hat I was in hospital for 5 weeks. I’m 58.

Moving on 13 months later,I haven’t touched alcohol, eat healthily, try to exercise daily etc. I am now on no medication, bloods and billirubin normal, Fibroscan F0-F1 , no ascites, and can honestly say I feel better than I have in years.

In not saying its all been easy. In the beginning I was very tired and continually cold and lost a lot of muscle. But, with exercise and good diet, that is all coming back. So, in answer to your question, yes your dad can vastly improve if he looks after himself and you sound like a wonderful daughter!

[Lplplp14 in reply to J4ck1369]

Thank you for replying, I'm going to show this to my dad too . He was in hospital too for about 5 weeks and I know the bilirubin levels were super high. Ascites is one he never got but I remember so many patients on the ward had it. Amazing to hear you now feel good and on no meds I'm so happy for you. I think when you hear stage 4 cirhossis you just completely panic so much , hearing stories of people doing well now and feeling good is so reassuring.

[J4ck1369 in reply to Lplplp14]

if your dad has any questions, Im happy to help.xx

[Onesmallstep1969 in reply to J4ck1369]

Stupendous! to go from decompensated (presumed) cirrhosis to F0-F1 (zero to minimal fibrosis) in 13 months is some sort of a record. Amazing work on your part.👍

[Dylant12]

Hi There,

I don't post much on here but have found it very useful, everyone is so kind and helpful, especially in the beginning when we were very scared when my wife was urgently admitted to hospital and diagnosed with end stage liver disease towards the end of 2020, She was stage 4 decompensated cirrhosis with ascites and had several drains whilst in hospital where she stayed for about 5-6 weeks , the one doctor looking after her case stated that she didnt think my wife would make xmas 2020! However, after not drinking or smoking since being admitted to hospital and since being discharged, she has eaten a healthy diet with gentle exercise, I am pleased to say we are still taking each day at a time but she has gained weight back to her normal eight stone, ( she went down below six stone when first diagnosed ! ) but her consultant is very pleased with her progress since then , although she is still on all the medication prescribed with lactulose 4 times per day, she is leading pretty much a normal life and enjoys being out in the garden everyday although gets tired easily with back ache if she does too much but is much improved since those dark days four years ago!

Hope this helps you and your Dad

[Lplplp14 in reply to Dylant12]

Amazing so it really can be turned around . It's obviously something now that we have to live with and accept but to know that if my dad looks after himself the best he can he can many years on front of him . So pleased your wife's doing so much better

[Lplplp14]

Thank you so much everyone for your replies, it has helped me so much I really appreciate it. I will be reading it all to my Dad and hopefully after the shock and hurt passes he can feel more positive about life going forward

[Onesmallstep1969]

As many of those have said before, your Dad's situation is far from hopeless. His health can turn around. He can lead a long and good life.

The liver is unique in that it can regenerate itself. If it is injured, you must stop injuring it. It then will have a chance to regenerate itself, to heal itself.

There are many cases of patients who have experienced reversal of fibrosis and even cirrhosis. But the key is--you must stop, remove, the cause of the injury. If it's alcohol, stop drinking. If it's obesity and overeating, eat better.

All people with liver disease improve if they exercise, even a little. All people with or without liver disease see their health improve if they remove excess saturated fat (too much red meat, for example) and eat plenty of vegetables and fruits. Talk to your Dad's physician before changing your regime but what I have described has been shown to work in academic studies. Good luck to your Dad!

[Lplplp14 in reply to Onesmallstep1969]

He has been trying to eat well , he's never been the best eater if I'm honest what he would call a healthy meal probably isn't all that healthy. He'll need help with it all to understand exactly what's good for him I'm hoping he gets alot of help and advice from his doctors. He's actually in a wheel chair has he lost his legs along time ago in a accident so he also struggles to exercise he does try to go swimming one thing he can do! He hasn't been for quite a while because he's been so poorly and weak but I am hoping he can get back to that once he feels better. He tells me he feels OK but I think he just says that to make me feel better . There is other family looking out for him because I'm so far away! He's going away with my sister soon on holiday it wasn't recommended however my sister is caring for him .it will be a very laid back holiday and he can relax as much as he wants in his room if needs be! I am worried but think it will be good for him to be able to get in the pool and have a swim . It's a quietish place so I'm hoping it works for them . He's got the appointment to get for varices when he gets back

[Onesmallstep1969 in reply to Lplplp14]

Good idea for him to relax on vacation, get a little sun, fresh air, swim.

[Lplplp14]

Does anyone know if your able to do a very long haul flight with liver cirrhosis(stage 4) I'm not thinking of for now I'm just trying to figure out if it's ever going to be something my dad will be able to do now, fly to Australia that is

[pushthrough in reply to Lplplp14]

Hello Lplplp,

Sorry to hear about your dad but all is not lost and he could potentially live a rather normal life as long as he never drinks again and retains a healthy lifestyle. I was around 38 when I found out I had it. It took almost a year for my bloods to go back to almost normal. Honestly I feel better now than I have in a long time and you will hear that from others because alcohol poisons our bodies.

The biggest concern with flying is portal hypertension which I also have. Portal hypertension is what causes varices and can be very dangerous because they can bleed quite easily from my understanding and requires immediate medical attention. If he has varices his doc will prob say he shouldn’t fly long distance. If he doesn’t have portal vein hypertension it’s possible to fly long distance but he would need a comprehensive work up.

There are a few ways to know if he has portal hypertension but it’s best to have them both completed.

Endoscopy and the dreaded colonoscopy- the camera pills are not as thorough so hopefully they are doing this.

MRI or CT scan- he should have the mri if possible they look at the liver, kidneys and the portal vein.

Liver disease is extremely complicated so it’s easy to get lost in all of the medical terms. I really wish people would stop referring to f4 (stage 4 fibrosis) as end stage liver disease. As Katie said, they are no where near the same.

Best wishes,

G.

[Lplplp14 in reply to pushthrough]

Thank you so much for your reply! He's got his endoscopy appointment soon . OK so best to see how this goes and go from there. I would love to get him over here but don't want to suggest it until I know its possible so I'll wait and see what the endoscopy comes back with , I cried so much when found out they had said stage 4 liver cirrhosis and first thing I did was Google it and worry! After joining some groups I've found so many people living good life's with late stage cirhossis yes there's many complications and you have to really look after yourself but definitely possible to have a good life. I'm hoping he's well enough to come here but obviously wouldn't want him to if it's too dangerous i will just wait and see how he's goes with the next appointment