Decompensated Cirrhosis?

[AlexJ91]

Hello,

I am relatively new to this forum and therefore I apologise if this has already been asked.

My Mum was recently discharged from an 8 week stay in hospital where she was diagnosed with decompensated cirrhosis, acute kidney injury, ascities, edema, HE amongst other things. Her chances of survival were low on her entry to hospital, however she has since been discharged and appears to have made a miraculous recovery in pretty much all areas. Her eyes are still very yellow (3 months post admittance to hospital) but her only main complaint is that she is having trouble sleeping (on average a 2-3 hours sleep per night). She is hoping to return to work in the coming weeks, however I am concerned that she will not be able to manage a full time role until her sleeping pattern improves. So my questions are: (I mean, I have so many but I am trying to be selective)

1. Can someone fully recover from decompensated cirrhosis?

2. Has anyone else here experienced significant sleep disturbance & have any advice on anything which may help to overcome it?

[Chris-harris]

Hi alex,

I will answer to the best of my knowledge and am by no means a doctor (but have been through most things liver related)

1. "Fully recover - I'd say no, improve greatly then yes. If your mum has scaring and cirrhosis it is not possible (currently) to reverse that. It is however possible to go from decomponsated to compensated and live a pretty normal life. The main thing is to treat the liver well, so no alcohol at all, good diet (although I'm pretty bad at that one) and if possible some exercise.

I was admitted to hospital child pugh C and decomponsated, basically google told me i had about a month and the consultant at one point told me i had a few days. That was 3 years ago and I'm now compensated and doing pretty well with everything. The yellowness will subside, took me around a year to get back to my normal colour.

2. Sleep difficulties - this is very very common with cirrhosis.

2 things cause it,

1. Something to do with the liver (not a very detailed answer but sure someone on here can elaborate),

2. The stress and worry. I'd say for the first 1.5 years my sleep was awful, an hour or 2 at best, this improved to a point where now i sleep like a baby, probably too much if you asked my wife.

Its been 3 months and at that point in my journey i couldn't even walk, give it time, if your mum does all the right things then sleep etc will improve.

If you have any questions that trouble you please message me, ill do my best to answer things from a "been there" point of view

Chris

[Hidden]

Hi Alex,

Have you seen our information on Cirrhosis? Here is a link:

britishlivertrust.org.uk/in...

We would suggest your mums liver team should advise and help with your queries regarding stage of her cirrhosis and also sleeping problems.

Keep us posted. If you would like a general chat about your mum and you are in the UK you can call our nurses on 0800 652 7330

[Hidden]

I fully recovered, but I had no scarring or any other kind of permanent damage, and I was never jaundiced. I've also been cirrhotic again since (but gave up drinking as soon as I found that out - that was almost 15 months ago that I stopped). Again, my liver has made a full recovery because no permanent damage was done - but I am one of the very few. This is by no means common, or even likely.

So I'd say yes, but only if there was no physical damage such as scarring. I would certainly advise against returning to work until your mother is a lot stronger.

[TT-2018 in reply to Hidden]

Your liver has actually become non-cirrhotic, twice? Can I enquire what symptoms you were suffering from and what exactly you were told that your diagnosis was?

I am surprised that you have actually been diagnosed with cirrhosis, given the all clear and then decided that you would drink again?

I am totally delighted about your outcome and am wondering if you are subject to further study into your recovery? Are you being monitored on a regular basis and what form does that take? Did you have any biopsy’s?

[Hidden in reply to TT-2018]

I apparently didn't need any biopsies, because I had no varices or any worrying contusions - just cirrhosis. I don't understand it either, I only know that I was in ICU and told I was going to die six years ago because I was heading towards end-stage.

Picking up the drink again was stupid: stress did that to me. I wasn't in the right frame of mind not to go running back to the wine bottle when I was at the end of my tether. Things are different for me now (I can't even stand the smell of antibacterial hand gel; I never want to put alcohol in my mouth again).

I think it was very early stages of returning cirrhosis when it came up again, as I certainly don't have it now.

I would love to tell you what my specialist says about me (beyond telling me that I'm something of a miracle because he'd never seen a complete reversal before). Sadly, the admin at my local hospital isn't the best, and because of some errors there I now have to ask my GP to refer me back to both my liver specialist *and* my epilepsy nurse! I didn't realise it had been three years since I'd seen either of them, as I managed to break my hip just over two years ago and have been wiped out on painkillers ever since while I wait for an actual hip replacement (which I was denied when I fell because I was deemed "too young").

I do know one other person who made a complete recovery in South Africa. You're not the only one who would like to know how it all reversed itself - I would too! It was never really explained to me, but I did see the various photographs from each ultrasound and even I could see the drastic changes between cirrhotic and healed.

[TT-2018 in reply to Hidden]

Apologies if I am being intrusive but I am genuinely interested. You were in ICU, so was the initial diagnosis compensated or decompensated and what stage? Upon the return of cirrhosis, again what was the diagnosis?

It certainly sounds like you are a unique case and therefore am wondering if you are subject to further study.

Congratulations on such a positive outcome and an inspirational story.

[Hidden in reply to TT-2018]

You're not being intrusive at all: I'm often asked these questions and I really wish I had the answers myself

In ICU I was diagnosed end stage. I had been vomiting blood (but no varices were found) and I had to have an ascitic drain. No jaundice, but I was very weak and very skinny, with almost no vitamins in my system. I also needed three bags of blood and three bags of plasma. I was completely decompensated and nobody really knows how I didn't die (I'm stubborn, maybe that's it lol).

No action was taken when cirrhosis showed up again, beyond regular blood tests, and of course I stopped drinking (I'd been trying to stop again for about two years, but because I'm epileptic I was advised to cut down instead of stopping. That's how I ended up with cirrhosis again, so I just took the bull by the horns and stopped cold). Thanks to the admin issues we only have blood tests to go on, and they're all as they ought to be. GGT is back to normal too.

If I can get referred back once this pandemic is under control I'm going to be asking a ton of questions, and I'll be posting any answers here

[Hidden in reply to Hidden]

When you recovered 1st time you had no scarring after having decompensated liver ? And did the drs say it was ok to drink ? That is so good keep us updated.

[Hidden in reply to Hidden]

I definitely wasn't told it was okay to drink - I was just horrifically stressed (to the point of suicidal ideation) and hit the self-destruct button again for a couple of years.

No scarring though, no. I was just incredibly lucky - and am now teetotal again

[Hidden in reply to Hidden]

When you went back on the drinking was it a lot ? You are lucky to have compensated again.

[Hidden in reply to Hidden]

Far too much - even I don't know how much I was drinking.

This time the cirrhosis was spotted in the very early stages, via ultrasound. I tried tapering off as advised on account of my epilepsy, but my brain ignored the cutting down part - so stopping completely was the best way for me.

[200987 in reply to Hidden]

I’m sorry but Cirrhosis IS scarring. You cannot be cirrotic twice. You either have it or you don’t. This answer should be removed it is misleading. I’m sure no harm was intended maybe wrong terminology

[Hidden in reply to 200987]

Well it's funny you should say that, as the British Liver Trust have done their own studies into this, as has my own hepatologist. Are you really going to tell hepatologists across the country that they're wrong?

How rude.

[200987 in reply to Hidden]

?.

[Lvone38]

It's sounds more like two cases of severe alcoholic hepatitis. Just my opinion tho.

[200987]

Indeed