Decompensated

[billyde]

Panicking I was admitted to hospital 19 months ago with jaundice and ascites, diagnosed with a decompensated liver. I got drained and stayed in for maybe a fortnight ? (sorry my brain is a total fuzz). I've been booze free since the day I was admitted and my liver doc says that my function tests are looking good. At my last appointment I saw a different consultant, who said pretty much the same thing, but as I left he said something that I thought a bit odd. He congratulated me on my abstinence, stating that he would have no hesitation in recommending me for a transplant ! Has my drinking totally destroyed my brain, as I have no memory of anyone ever mentioning transplants. I remember being told to stay off the booze but that was about it. So then I found this on Healthline.. 'People diagnosed with decompensated cirrhosis have an average life expectancy between 1 and 3 years' ! wtf ? So I'm over halfway through the rest of my life and nobody stopped to mention it ?

[bintcliffe]

My consultant said that to me over 4 years ago I'm still here with my original liver, I think he means if you need a transplant sounds like your doing good.

Hayley

😊

[billyde in reply to bintcliffe]

But what about the decompensated thing ?

[bintcliffe in reply to billyde]

Mine was decompensated on arrival at hospital but with a T total life good food and exercise it's now compensated it sounds to me that you too could be or are on that path, good luck, Hayley

[billyde in reply to bintcliffe]

omg that could be the answer I was after. (though I'll check with the hospital tomorrow) I know cirrhosis is a forever thing. Can a decomp liver improve then ?

[bintcliffe in reply to billyde]

Of course it can, all my organs failed they thought I wouldn't live, but here I am, get your doctor to explain the different stages of liver cirrhosis but the people on this forum are brilliant they could probably explain it as good as a doctor ☺️

[billyde in reply to bintcliffe]

There's a distinct possibility that I switched off when someone was telling me something important. My memory is shot to bits and I'm away with the fairies half the time. I was kinda hoping that would go after a stopped drinking but no, it's worse

[AyrshireK in reply to billyde]

Are you on any treatment for a condition that goes along with cirrhosis called Hepatic Encephalopathy? It's a kind of brain damage that occurs due to toxin build up in your blood stream/brain. Usually it's treated with Lactulose to help you move your bowels 3-4 times a day to clear toxins and also Rifaximin which is a kind of antibiotic which helps deals with toxins.

It's possible that your confusion/brain fog/memory issues are symptoms of HE rather than a symptom of your previous alcohol issues. You can read more about it at:- britishlivertrust.org.uk/in...

Katie

[billyde in reply to AyrshireK]

I mentioned this to the consultant and he did the 'flappy hand' test. I seem to have all the symptoms apart from the flappy hands, but my GP has been switching my head meds to try and find something that works. I have PTSD. I'm currently on Mirtazapine which was stopped by a previous GP as I was waking up unable to breathe. Tried Fluoxetine but that made me sick, so now I'm back on Mirtazapine with another GP stating that my problems with it are simply down to the drugs effect on sleep patterns. The consultant said that it would probably be best to see how the Mirtazapine works before trying anything else as the drug in question (guessing Rifaximin?) means I wouldn't be able to drive. I stopped with the lactulose a few months ago as I have a small inguinal hernia and the lactulose made it much worse. The consultant didn't seem too troubled by this and sent me for AFP, U&E, LFT, GGT, HbA1c, B12, Folate, Ferritin, FBC and coagulation.

[AyrshireK in reply to billyde]

My hubby has a diagnosis of mild HE but no flappy hands (Asterixis). He deffo has all the milder stage symptoms. He hasnt' drive since he was first diagnosed with liver disease - just knew himself he would be a danger.

[AyrshireK]

Just because he's said he would have no hesitation recommending you for transplant doesn't mean you need one at this time. Nor does it mean you are borrowed time. It would totally depend on how you are doing - as your bloods are good I presume your symptoms have massively improved too.

Transplant is a life saving operation and will only become necessary where someone is in very end stage of decompensated cirrhosis and in the case where someone's condition was alcohol related then a minimum proven period of 6 months abstinence is required before you can progress to transplant assessment and it sounds like the doctor was just congratulating you on your doing so well and saying that if the need arose for transplant then you would be a suitable candidate and he would recommend you.

Forget things where you've seen life expectancy, no one can say for sure when a damaged liver will give up the ghost. It sounds like yours has improved massively by making the big lifestyle changes you have. Had you not become abstinent then your life expectancy would be poor.

(My hubby was decompensated on his first appearance in hospital in April 2012 (not alcohol related), he did go on to be assessed and listed for transplant but because his liver improved and stabilized it took him out of the qualifying criteria for t/p - that was in 2015 and all these years later he remains stable and able to live a half decent life).

In the UK there is a scoring system for transplant listing which is UKELD (United Kingdom Score for End Stage Liver Disease) - a minimum score of 49 is required before someone can be listed for t/p and this is calculated based on your blood results for INR (blood clotting time), Serum Creatine, Serum Sodium and Bilirubin. If you don't score 49 then you are not poorly enough (unless you had liver cancer which over rides UKELD requirements).

Katie

[billyde in reply to AyrshireK]

So could decompensated on admission be an event rather than a forever thing ? Not making a great deal of sense. The website (yes I know!) pretty much said that if you have a decomp then you have 1 - 3 years

[AyrshireK in reply to billyde]

A decompensated liver usually means you have either ascites and/or bleeding from varices and are dreadfully poorly - if your symptoms have improved and you have near normal bloods, no bleeding from varices and no longer having ascites build up then you'd more than likely be considered compensated.

It is entirely possible that a once failing, decompensated liver can become recompensated and in the case of alcohol related liver disease this can often be achieved through abstinence where the liver is no longer under attack and is able to improve greatly.

The BLT page on cirrhosis details the many symptoms that a cirrhotic liver can present with. britishlivertrust.org.uk/in...

If you are still really poorly, still jaundiced, still suffering some of the 'red flag' symptoms then you would still be considered decompensated and the issue of requiring transplant would come to the fore.

Katie

[deanw41 in reply to AyrshireK]

That’s sounds like me..

[Zukosmile07]

Katie is absolutely bang on (never doubt that), look at the BLT sites not Google. If you never have to go in to be drained again or maybe once more while you stay off the booze, it's totally likely you are at the first stage of decompensated which (like what Katie said) is reversible with no alcohol and the right diet for your condition.Good luck 🤞

Danny x

[Ubwa]

Hey ho.

It’s not all doom and gloom. I went from you-are-about-to-die decompensated to compensated. Just follow a good diet, do what docs say and hopefully you can have a good outcome 👍

Edit: and of course the most important thing is to stay away from alcohol

[Hidden in reply to Ubwa]

Oh the relief of reading that!! Congrats mate

[Hidden]

Hi Billyde - looks like you have had some great advice here. If you are in the UK and you would like to talk things over, our nurse led helpline is open from 10am to 3pm Monday to Friday on 0800 652 7330.Trust10.