Decompensated liver

[tomgill]

good morning everyone.looking for information on what to expect.my brother has been diagnosed with Decompensated liver disease after many years of heavy drinking, he’s now a severe alcoholic, He was admitted into hospital 6 weeks ago with all the symptoms of liver disease, he was kept in for Five weeks had detox, fluids drained and various other treatments he was also severely malnourished, it’s now been two weeks since his discharge, first week was good, carers going in to him three times a day, we were making sure he had a well balanced diet and he was being very positive, things were looking good, Over the past few days we noticed his demeanour changing, moody, argumentative, sleeping more, we put it down to the condition, just having a bad few days, it’s since emerged that for the last few days he’s been going to the local shop and getting his alcohol, today for example he was spotted getting some at 7.30 am . So all the care and effort the family have put into him has been for nothing, we now have to resign ourselves to the worst outcome, WHAT CAN WE EXPECT going forward. 64 year old male, probably drinking 8 cans medium strength larger, bottle wine and any thing else he can get per day, Thanks for reading ,and any advice given

[Grassroots112]

I’m sorry you are going through this right now and even more sorry for your brother, alcoholism is awful and if he continues, it won’t end well or pretty. I was drinking myself to death this time last year and had to be hospitalised, thankfully I’ve been lucky and seem to have escaped the worst and I believe that’s down to a) being hospitalised and treated b) quitting drinking and c) eating healthy.

I’d be dead now had I continued to drink, I was told my my doctors I’d be lucky if I’d live another 2 months for example if I started drinking again upon my release. The good news is, cirrhosis isn’t always a death sentence, it can be managed through abstinence and healthy eating and at the extreme end, with a liver transplant and decompensated cirrhosis can be reversed to compensated, but a lot of hard work is needed.

Unfortunately this is something your brother has to want, and will need help with that, lots of help, but even so it has to come from him and only he can force himself to quit drinking because if he doesn’t, there is no surviving this and he must stop drinking ASAP for life because he already has a badly damaged liver that isn't functioning and by drinking that damage will only deepen more and more where there will be no turning back from it.

As an alcoholic in recovery I sympathise massively and can only hope your brother sees the light and gets the help needed to assist him and that he can remain strong enough to stop for good because he can recover from this, there are many many success stories and my own doctors have told me they have patients today who were diagnosed 20 years or so ago who were at one point in intensive care and told they wouldn’t survive a few months never mind a few years. I was drinking 2-3 bottles of whiskey a year back killing my liver, kidneys and other organs and I’ve had to work damn hard to turn it around and can only thank my lucky stars the damage my drinking did wasn’t full blown cirrhosis. If I start drinking again though that’s where I’m going so can never drink again.

All you can do is be there for your brother if you can even if it seems pointless and mission impossible so to speak regarding his drinking, it must be so tough on you and your family and it hurts I know because my own family have told me how my drinking hurt them so much, but you must never beat yourself up over this or feel at fault or that you can do more or should do more, it has to start with him first and he has to stop and stay sober if he wants to live it’s as simple as that.

I wish you good luck and hoping for a much better outcome for yous all and that your brother finds a way to stop and get better because it can be achieved. All the best 👍

[Ilovedavid in reply to Grassroots112]

I'm curious 🤔. You say that you were extremely ill, hospitalised and nearly at death's door, but had not got full blown cirrhosis. What was you diagnosed with to end up so poorly? I was a heavy drinker, although never an alcoholic, and diagnosed with ARLD, full blown cirrhosis. Was lucky enough to have been able to stop drinking immediately after diagnosis with no problem, but was never hospitalised with any symptoms or illness.

[Grassroots112 in reply to Ilovedavid]

Hi, I was hospitalised with jaundice and ascites and on my charts it stated alcoholic hepatitis at first, but when released I got my full records and most stated the same, but the notes would say likely decompensated cirrhosis.

I was told after I pushed and pushed for a diagnosis that it’s best to wait for awhile until my liver had a chance to see if it heals first with abstinence and then they would carry out a fibro-scan to further investigate, which they did and it come back as 22.2kpa.

That’s when I started getting regular phone calls from the cirrhosis support team, but again my hep doctors wouldn’t fully diagnose me and said let’s we what happens after yet more time remaining sober and rescan again, which they did and it went down to 9kpa and the phone calls stopped and my hep doctor said my liver had remodelled and is showing moderate fibrosis, but that it’s still scared, just not cirrhosis. He did caveat that with a warning that in reality they cannot possibly say for certain unless they removed my liver and placed it under a microscope.

I’ve since learned they shied away from fully diagnosing me and wanted that time in between because certain things were not indicative of cirrhosis like my platelets, INR etc. and that with alcohol liver disease especially, it’s different to other forms in that a person can present as having cirrhosis, even decompensated, but it can be more like an acute version that can then recover once the cause has been removed and even remodel itself to a certain degree with continued abstinence and inflammation or stiffness levels allowed to heal. Which mine obviously did.

[Ilovedavid in reply to Grassroots112]

Thanks for your reply. That's very encouraging. I have been under gastro guy for nearly three years being treated for acid reflux. Bloods and scans all normal during this time. Then bang. Got jaundice and edema in left leg and sky high bilirubin of 145. Consultant had already referred me for fibroscan and was awaiting appointment, but even before I had this done, he wrote to me and told me I had cirrhosis. When I eventually had fibroscan, score came in at 73.4!! Liver nurse said she thought my liver was inflamed, but that I still had cirrhosis. They were meant to give me another fibroscan in 6 months after the first but, when it came to it,decided not to, as my bloods had returned to near normal, apart from problem with ferratin levels which were,and still are very high. Was told that they go more on blood results rather than scan readings. I am due to speak to the consultant in June (having had to wait 7 months for the privilege) and am going to insist on another fibroscan to see if score has come down. I am kinda praying that it's not as bad as they initially thought. It stopped me drinking though, which is the main thing. Am optimistic for the future. I wish you all the very best. You were extremely lucky. X

[Grassroots112 in reply to Ilovedavid]

Hi and thanks and yes I was extremely lucky and feel very fortunate and blessed really. And that’s great that you stopped drinking, it really is the only way with any liver disease even moderate as that’s the number one culprit that damages it or will keep on damaging it if your liver disease isn’t alcohol related. And to say they don’t feel you need a scan is wrong, you have to push for it, I pushed for mine, but my doctor is great to be fair and he, like me, wanted to double check so to speak because of my bloods in the main as they too were improving all the time. My bilirubin at one point was over 80 and I never got swollen legs, just the swollen belly where I had to be drained of 5.5 litres. You should be optimistic, when I was in hospital I looked at myself and thought my future would be very bleak and even now I remind myself every day I have to keep going and worry about my liver because I’m told it’s harder to reverse the fibrosis and easier to let it get worse which it would if I drank and started eating junk food every day. Push for that scan because you’re meant to have them every 6 months in one form or another. I’ve got one again in June for example.

[Aotea2012]

You poor thing. It’s incredibly difficult. I’m afraid he cannot drink alcohol and survive. He must remain abstinent if he’s any chance of recovering. If he does then he could go onto live a normal life. I was in a similar position to him back in March 21. I was told that if I continued to drink then I would die and in the not too distant future either. It terrified me and I stopped. I was in hospital at the time and knew that I would be back in if I touched a glass of wine again. I haven’t. I’ve eaten well, exercised and I’m pleased to say have normal bloods, no varices and no symptoms. I take no medications. I’ve returned to work in a demanding job and feel really well. I would say I’ve been very lucky…I had support at the start to remain abstinent after my detox in hospital. It was important. See if his GP could refer him to local alcohol services to help. It’ll not be easy for him…and he sounds like he needs some extra support at the moment. Alcohol can have devastating effects on individuals- as I know only too well. It can have equally devastating effects on families who watch their loved ones go into self destruct. You can only be there for him…you can’t make him want to stop. Only he can do that. It’s crucial that you look after yourself and make sure you get support too. Take care.

[RugbyMama]

I am so sorry to read this. It must be very difficult for you and your family. As others have said, he cannot drink alcohol and survive. Your liver has 500 functions to perform and if he is drinking heavily then it will focus on trying to process the alcohol and other functions will fail.

The change in mood could be hepatic encephalitis, where ammonia builds up in the system and causes issues in the brain. This can be treated with laxatives and ensuring bowels are opened several times a day.

Are carers aware he is drinking again? You need to contact his medical team to let them know, but in terms of what you can expect with decompensated cirrhosis if he does not stop drinking the outcome will not be a positive one. The British Liver Trust helpline is brilliant and should be able to help you. Good luck!

[Hidden]

I was in a very similar position myself, drinking 4 bottles of wine every day, my abdomen eventually became full of fluid, had jaundice and had to be admitted to hospital. I was only 38 at the time, I was told if I continue to drink it would be a matter of weeks, or months if I was lucky. I had badly deranged bloods, sky high ferratin, bilirubin, low albumin, low platelets, I was so malnourished.I got medication to help with the withdrawal, had ascites drained which was around 10 litres, I slowly started to get better, and I was one of the lucky ones who has managed to stay alcohol free, I can both understand how hard it must be for yourselves, and your brother, he has to want to stop, it's such an awful disease, all anyone can do is explain everything to him, that he will die if he doesn't stop drinking, the rest is upto him, I went through stopping and then starting again over the previous years, until finally I became that ill, it took that to shock me, I have so many regrets, I was so stupid for not stopping earlier, but I can honestly say that I will never drink again.

Talking to someone who has been through it all themselves might help, if you ever want to talk, or have any questions etc feel free to drop me a message, I'm more than happy to try and help. Has your brother been prescribed any medication such as acamprosate to help with cravings? I know some people do get it, I didn't need it, I had no interest whatsoever in alcohol once I left hospital, I was only in for a week.

I was decompensated for a few months, and have gradually improved, I have esophageal varices, which I get banded, I'm on lactulose, take many supplements such as thiamine, calcium, vitamin D and magnesium, which most people who have cirrhosis are prescribed, I have cirrhosis it's never going to go away, and I have peripheral neuropathy caused by the alcohol aswell, but I'm recompensated currently, back to my normal weight, no ascites or jaundice, my bloods took 4-6 months to get somewhere near normality, still have lower platelets, have to get ferratin infusions, I will probably need a transplant at some point, but it shows there is still hope if he can stop drinking, and stay stopped.

There is still hope, if your brother stops now, I'm proof of that, I stopped drinking in June 2022, and my liver won't improve further, lots of appointments, and ups and downs both mentally and physically, the British liver Trust are fantastic, they have a helpline with excellent liver nurses, who can offer advice and support, helped me alot, and the zoom meetings are really helpful, talking to people who understand what your brother and yourself and family are going through. I really hope your brother stops before it's too late

[LemonMeringue15]

I'm really sorry you are in this position. If you search my posts you'll see that my children lost their dad in 2022 as he also had decompensated cirrhosis and couldn't stop drinking. One thing to remind yourself of if you can, is that only the drinker can stop drinking. You can't force them.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear tomgill

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)

We also facilitate a range of virtual support groups for people 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

[DaveQ67]

Hi,

Your brother is not alone in his situation.

Like all other comments I will reiterate, he won’t last if he drinks. I’ve been sober 9 months. Since my diagnosis.

I consider myself lucky, even with what feels like a death sentence at times.

I had a bleeding tongue after biting it, which wouldn’t stop bleeding. I went to hospital where I found out I had decompensated cirrhosis. There’s a choice then and there. I can try and build my life back together ( where I lost everything and I mean everything) or….. do the easy thing, where I know people who made this choice and have the attitude of the damage is done and there dead anyway.

The simple fact is only your brother can make this choice. I won’t lie, the first 4 months of abstinence I was at a loss, I felt no enjoyment being sober. If the truth is told looking for a loop hole where I could enjoy a drink at some point. This does not exist.

The very thought of drinking now disgusts me. No drastic changes are needed at first if your brother finds them daunting. Stopping us enough. Just starting with structuring the day can be enough to stop boredom, which is the enemy. Each day even starting with 1 simple task can help.

There’s only so much that you can help with. The bottom line is he needs to want to do it.

Alcohol is horrific as an addiction, our world revolves round it and is in your face every day. The withdrawals are horrendous. If that’s been broken the next part is the head and habit.

There’s been times a come close to giving up, drink got me through tough moments in the past. Since admitting to my wife I had a problem about 12 months before diagnosis. By asking my GP for help, I lost my car licence although never cautioned, which lost me my job as a firefighter of 18 years. My marriage broke down and ended. I was then homeless, due to my admission my wife then used it against me to stop me seeing my kids. All my friends turned there back on me ( don’t think they meant too) then diagnosed cirrhosis decompensated.

For years I relied on drink to deal with issues, the tough thing is when you get the news of cirrhosis, what do you cope with as an alcoholic??? It’s not easy but having his family who care is a huge plus, but…… it’s down to him to make the choice for him and life.

I wish your brother and you all the best

[teletonetapper]

You and your family have done everything you can and, as other members have posted, it will be your brother's responsibility to overcome this awful "addiction". Such an anxious time for you all. Our daughter is an alcoholic and I went to the local shops and explained the situation and told them not to serve her any kind of alcohol. They were extremely helpful and even rang me to say when she had been in - needless to say they did not serve her. However, I couldn't go into the Supermarkets as there are too many of them. Please take care of yourselves too during such a worrying time for all. I sincerely hope there will be light at the end of the tunnel for your dear and precious brother.

[Rshc]

I am so sorry you are going through this. My partner has ARLD but thankfully now compensated and doing well. I wonder does your brother know that there is hope, that if he can give up alcohol that he can with time hopefully recover and live a long life? I do wonder if people give up as they think the damage is done