still decompensated after 5 months any hope?

[Rshc]

my partner diagnosed with decompensated cirrhosis on 22.12.21. Stopped drinking that day, 5 months later eating healthy high protein low salt, doing everything he has been asked. At the start sodium was dangerously low so he couldn't take water tablets - now his sodium is back within normal levels whilst taking a pretty high dose of diuretics and he has next to no fluid and no drain booked. They think he will be a good candidate for transplant as he is basically healthy otherwise but whilst we are so very grateful for the opportunity to try and be listed and he will of course undertake the tests we wonder if there is still any hope of re-compensating. They said at the start they 'expected' this to happen, now they no longer say this. His bilirubin drifts up and down - was 54 about 10 days ago, now 62 (It was 250ish at its worst), his doctor said his bilirubin was remaining 'stubbornly high'. His platelets the same - at their best 160, now 98 and his INR at its worst was 1.7 but has only improved to 1.5, albumin improved from 22 to 28 but has remained the same for a month or so.

I guess what I am asking is with these bloods and almost 6 months down the road do we need to get ours heads out of the sand and accept that a transplant (god willing he is accepted) looks likely. Has anyone had bloods like this and its taken longer than 6 months?

thank you

[Aotea2012]

Well I think it’s important that you listen to his doctors. We are not qualified to talk about clinical stuff here...so please treat what I say in that context. I think 6 months of no alcohol, good diet and generally looking after himself should have had some benefits. Which from what you describe they have...he’s no fluid and some improving bloods. I do think if he was going to recompensate that would have happened by now though. But never say never. His doctors will review the transplant options when they review him. No one seems to have mentioned it yet which suggests they are still considering options at the moment. Try not to get disheartened, the liver is an amazing organ, so who knows what may happen. I remember asking my consultant about predicting outcome...and he said he was still surprised by patients. He pointed me to some research done by Southampton Uni, which showed that cessation of alcohol was the single most important factor in how well people did. The extent of liver damage was secondary. I think I’d be asking his clinical teams the question about transplant directly at his next appointment. See what they say.

[Rshc in reply to Aotea2012]

Thanks, they are discussing transplant but in a low key non urgent way, he has had some initial tests

[Aotea2012 in reply to Rshc]

Ok. Well take each day as it comes. Keep positive.

[Hidden]

I'm always surprised how fast people recover. I have ARLD, my cirrhosis was decompensated for over one and a half year.

Main problems were ascites and jaundice. My bilirubin levels were extremely slowly coming down, it was so frustrating. Same with ascites. Was on diuretics 15 months. First ascites, then odema.

But month after month, symptoms got better, bloods improved. Today, after four years, my biggest problem are low platelets, but that's it. Child Pugh score 5, liver and I being friends again. 🙂

So, my advice is: patience, patience, patience.

(And I even didn't have a super healthy diet. But if course no alcohol. And I also think that stress is very bad for the liver.)

[Rshc in reply to Hidden]

Thanks so much, good to hear you are doing so well. We will keep plodding on

[VickiSpence in reply to Hidden]

Thank you for this, even though I didn't ask the original question. Coming up on a year for me and bloods steadily improving, still on low dose diuretics. But bilirubin creeping back up last 2 blood tests. Was hoping to be compensated by now. But I won't give up on it yet. Thank you!

[Rshc in reply to VickiSpence]

It sounds like you have already come so far. Just keep doing whatever it is you are doing and keep the faith. I keep being told bilibruben is one of the slowest to resolve

[Hidden in reply to Rshc]

And that is true! Bilirubin almost drove me insane. And unfortunately it really showed on my skin and eyes, I felt very uncomfortable. 🙁I'm so thankful it's better now, but it really took a long time.

[Cat-B]

Hi it has taken me 6 years for my liver to recover from decompensated ! My liver function is normal now. If you think about it, it takes a long time to cause the damage and it’s a long journey to recovery, 6 months is not nearly enough time. Carry on with the diet and exercise. Recovery is possible but it’s a long slow journey. Good luck

[Rshc in reply to Cat-B]

wow 6 years, well done you! If you don't mind me asking, whilst you were decompensated what were your main issues, did your bloods fluctuate? Partners bilirubin has come down a lot but is pretty static now as is INR. So glad things have improved for you

[Cat-B in reply to Rshc]

Yes my bloods went up and down but if you monitor the 6 month trend you’ll get a better picture ( I plotted mine on graph paper and that helped me stay focused, my GGT was the last to correct and is reading 50 ( not perfect but who needs perfect lol) let me know if I can help with anything. Take care of yourself it’s most important

[Rshc in reply to Cat-B]

thanks so much, that's really helpful.