Diagnosis today which has shocked me to the core

[Heartbr0ken]

My partner has just been diagnosed with alcohol cirrhosis of the liver at the age of 48. He’s not an alcoholic but has been drinking to excess most of his life. I’m heartbroken. He is still in hospital but as soon as he is well enough he will be able to come home. I was told he would have an expectancy of 1-3 years according to guidelines. I am determined to get him fit and well so he can be assessed for a transplant in time. I’ve spent the whole day in tears. My partner doesn’t know the severity of it yet. He is my soulmate and the thought of losing him is too much to bear 😢😢😢

[AyrshireK]

Sorry to hear of your partners new diagnosis, hopefully we can all provide support and advice based on our own experiences. First thing I wouldn't go with is any talk of life expectancy. It depends on what symptoms or stage of cirrhosis your partner has reached and even from the most advanced stages of cirrhosis it is often possible to reverse some degree of cirrhosis and it is possible to live a long life even with a diagnosis of cirrhosis.

My hubby was diagnosed with stage 4 / decompensated cirrhosis back in April 2012 - his isn't alcohol related - he was bleeding from from varices and had massively out of range bloods. He was assessed for transplant in June 2014 but improved so much that he was delisted in 2015 and is still going strong. Ok he has symptoms but is no where near transplant needy. So it isn't all doom and gloom.

Your partner will need to kick the booze completely if alcohol is deemed the cause of his condition. He can only be assessed for transplant if he has proven abstinence and a commitment to life long abstinence for 6 months.

He'll need to be poorly enough to warrant transplant yet fit enough to undergo the procedure.

As a wife who is supporting a loved one with cirrhosis I have found that it greatly helps to swat up on the condition, learn as much as you can, learn what you need to look out for and support your loved one at all appointments as two pairs of ears are always better than one and you have to be a 'team' in living with this condition.

The British Liver Trust website is a fantastic source of information for all aspects in life with cirrhosis. There are pages on cirrhosis, living with liver disease, dietary advice, patient charter as to what to expect from medical professionals. It is a gold mine of information.

britishlivertrust.org.uk/

As any questions pop up, ask away, there are always folks on here who have been were you are at any stage of the journey.

Best wishes, Katie

[Heartbr0ken in reply to AyrshireK]

Hi Katie,

He is at band C as regards to his liver damage but not sure what that actually means. He is slowly getting back to his normal self after being confused and agitated. He is eating well and having plenty of fluids. Doctors are quite impressed with the progress he has made so far. I’m definitely going to start swotting up and give him all the support he needs. We have the support of the whole of his family. Thank you for the positive response xxx

[AyrshireK in reply to Heartbr0ken]

There are different scoring systems used in the defining of cirrhosis.

First of there are the differing degrees of Fibrosis from F0-F4 with cirrhosis being F4 or sometimes known as end stage liver disease.

Cirrhosis is then split into different stages.

Compensated Cirrhosis is where the liver - although badly damaged is still doing the majority of it's important functions.

Stage 1 is defined where there is cirrhosis but no ascites, no varices.

Stage 2 - varices, no ascites.

Decompensated Cirrhosis is where the liver is really struggling to fulfill even it's most important functions.

Stage 3 - ascites, +/- varices.

Stage 4 - bleeding, +/- ascites.

The scoring system where stage C is mentioned is the Child Pugh system which is a scoring system which puts together the results from various blood tests to come up with a mathematical score. Child-Pugh C is indeed the more severe end of the scale but not impossible to reverse to some degree.

It totally depends on what symptoms he's exhibiting - the confused and agitated state could either be due to alcohol or a side effect of cirrhosis called Hepatic Encephalopathy (HE) which is due to toxins building up in the blood stream and making their way to the brain.

The page on cirrhosis is an easy to understand page which explains the condition and the various symptoms.

britishlivertrust.org.uk/in...

Katie

[Lam1e]

I know this must be difficult, but do not get caught up in the “life expectancy”. Everyone is different and there are so many ways for him to get better and he needs to completely stop drinking alcohol! I am sure it won’t be easy, but to give his liver the best chance of recovery and If he does need a transplant then he will not be considered unless he stops drinking!

My liver did not recover and received the gift of a liver in December 2019!

You both need to understand the illness and get a plan in place, and your partner needs to really understand how ill he is.

I am sure with your support and the support of his medical team he will get better🙏

Lesley

[Xenom0rph]

There are already.some good replies from our resident posters but just to echo the statement that having this condition != Death sentence. Damage limitation and management, yes but there needs to be significant changes.

My own story is similar. Although I don't actually believe I was given a "score". At the time I had bleeding varices but no ascites. I haven't had a bleed in almost a year after banding so I wonder if that has an impact on grading.

Booze is simply no longer an option. The decision is made a little easier (for me at least) when it's as black and white as death or no death. There is NO swapping boxes but one decision will guarantee a box of some kind much earlier.

I worry daily. I have been feeling really bloated recently and am convinced I have fluid that might be ascites but I'm not sore if it's just a lockdown belly. Consultant appt has been scheduled for September but it's a Telco.

Good luck, listen closely to what the docs have to say and please don't be afraid to challenge anything you hear. Your mind will play tricks on you and it's important that you stay levelled headed as much as possible for your partner. He will go through the usual stages of denial, anger, false promises and eventually acceptance.

Good luck.

[Palpman]

I was tested positive for hepatitis B and cirrhosis when I was 41 years old. I am now 65 with no trace of this.

[jacobsmum24]

I am sorry to hear your partner has been diagnosed with cirrhosis. Please don"t focus too much on life expectancy. When I was first diagnosed, I wasn't given a life expectancy and frankly I wouldnt have wanted to know. However, now that I understand my blood test results and symptoms better, I know I would have been Child Pugh Class C with Life expectancy 1-3 years, the same as your partner. 15 months on, my Child Pugh Class is A with Life Expectancy 15-20 years. I am lucky, I have no ascites and no HE. I do have 3 non bleeding varices that didnt require banding and are managed by medication. I live a fairly normal life and try not to think about how long that might continue for. I do have a few symptoms that come and go which do start me worrying sometimes but I have gradually got used to living with cirrhosis rather than dying from it.

If your partner was drinking heavily right up to his admission to hospital, his liver enzymes will be very high but in a few weeks time with no alcohol and a healthy diet, there should be a vast improvement. It is the same with scans, there will still be lots of inflammation visible if he was drinking recently. This will settle down if he stays alcohol free.

Can I ask what symptoms your partner had that resulted in him being admitted to hospital ?

[Heartbr0ken in reply to jacobsmum24]

He has jaundice, swollen stomach and once admitted had hallucinations. No bleeding. The HE is slowly going and he is sleeping, eating and drinking well

[cammeag]

I have decompensated liver since April 2019. The first six weeks were life or death. hospital helped with meds but mainly through prayer and study, prayer and study...i am now five stone lighter, feeling better than since my mid twenties, im 54, and i have a scan this afternoon which im not the least bit trepedatious (dont know spelling about. If you want help with diet or a listening ear 24/7 for you and hubby my email is cammeag and im at hotmail, dot com. I know its not the done thing but sometimes we need that bit of one on one and ive given it a few times on here. Either way, i hope you and hubby face this together and see a bright horizon not one of gloom.

david.

[Irishhound]

Hi, I previously wrote about a family member having a similar scenario, when she realised she may not lead a normal life or worse still die, she cried and then almost gave up. 2 weeks later and a lot of pep talks, she is doing so well, even the doctor Is impressed. She has finally got out of her hospital bed, takes her medication and tries. It’s hard at present not seeing her and having to do this over the phone but we are so pleased. There is light at the end of the tunnel, we all need to be positive. We accept that this will not get completely better unless a transplant comes along and that’s way down the line but life can still go on. She laughs with us on the phone so we hope that continues when she comes home, (not sure what home life will entail carers, nursing, hospital visits, draining etc. )Take care, find the positives. There are too many negatives out there.

[Lam1e in reply to Irishhound]

So pleased to hear your relative is making progress. Hospital sounds like the best place for her and for ensuring she is getting the meds and care she needs! Hopefully they won’t discharge her until there are support plans in place for her!

I initially spent 4 weeks in hospital and after discharge needed regular drains and was assessed for transplant 6 months later! But that time in hospital was much needed Though I didn’t think so at the time. All the very best to you all🙏

Lesley

[Hidden]

Hello and welcome,

You have come to the right forum for support during this stressful time.

Please do visit our website for useful information/ publications. You may also want to call our nurse led helpline on Monday 10am to 3pm on 0800 652 7330

You are not alone

Warm wishes

Trust1

[jazzjam]

One thing to have in your mind is that when he knows the full extent of it he might just not believe it. If I can explain, I was diagnosed out of the blue after going to the doctors with a persistent cough. I was told you have 12 months if you keep going like this. Honestly I continued to drink, not to an extent because for one, I never believed I ever did before. Even now 4 years down the road I look back at my drinking and think I still don’t understand it.

I did stop a few months later. I had to get my head around it, it may sound stupid, death v life but I couldnt quite believe I actually could die. I was scared that my life would change, a life that I loved and honestly it really has, what I thought would happen when I stopped drinking has. I barely go out to the pub anymore, not because of the drink, that doesn’t bother me at all but just because after a a couple of hours everyone has had a bit to drink and they are on a different wave length to me. Relaxing after a busy week with a glass of wine and a bath. We eat out about twice a year, birthday, anniversary because everywhere you go they load salt on everything. (I am abroad with work at the mo) when I return automatically everyone meets in the pub for hours and hours on end, which is a good laugh and i really enjoy it for the first two or three hours.

After saying all this though, it is the best thing I have ever done. I love having a good nights sleep, getting up early, walking, exercising or just getting my jobs out of the way on a weekend. I feel so much better in myself and I can tell when my body is feeling good. I do enjoy it when I go out for a couple of hours and have a good natter and a laugh.

Your partners life will change massively so it will be hard stopping something and changing a lifestyle that you have had for the last 20 years. You can only be there for him as best you can. I think it is very hard on the partner so remember to look after yourself also. As others have said, don’t focus on the timescale they gave at all until you know the full information. Take care 🌻

[Deb3822 in reply to jazzjam]

You sound exactly like me lol

[Roy1955]

"He’s not an alcoholic but has been drinking to excess most of his life"

That statement is exactly describing me. or at least describes what I would say before I realised you cant say those words in the same sentance!

It's like saying he only has 2 lines of coke a day but is not a drug addict.

He should not be ashamed if he needs help to stop drinking, it's not easy to just quit.

Take all the help on offer.

I quit over 3 years ago and slowed/stopped the progression of cirrhosis (with Drs help) and my consultant now says I have " normal" life expectancy.

[Cb1963]

This is terrible news that you have recieved, and its trying to get as much information together so you can get as much help,I was a chronic alcoholic, and was extremely lucky to come away relatively unscathed from drinking, I had many hospital stays,and I don't know how I survived,but once you've got your partner back home, there can be no more drinking alcohol, and long term outlook maybe a transplant,its always difficult giving advice as the liver can heal in different ways,and of course you have to be absolutely free from alcohol for at least 6 months before this can happen, but all this is speculative, as you don't know how he's going to respond over the coming weeks, but by the sounds of things it's not sounding to bad,it will be a slow journey, and maybe there will be a few bumps along the way,hopefully with a careful diet,and his medication being carefully monitored things will continue to improve,its so difficult trying to give you 100% answers as we all heal in different ways,and we are not all the same, I hope you partner starts to feel better in the coming days,and this site gives you a little more insight to your partner's condition.

[Deb3822]

I was given 2 - 5 yrs to live, 9yrs ago!! As long as he doesn't drink or do anything to cause more damage, he should be fine.

[Heartbr0ken in reply to Deb3822]

He passed away in September 😢

[FriedOnions in reply to Heartbr0ken]

Sorry to hear of your loss.