Decompensated to Compensated

[MississaugaLiver]

I see many folks posting how they’ve gone from decompensated to compensated with proper diet, no alcohol, etc. Hubby has been doing that for about three years, but no real improvement. Is it because he’d crossed the threshold with having esophageal and gastric bleeds, portal hypertension and ascites? He’s not having bleeds, but there are still small varices on his ultrasounds. He’s fed up that he’ll feel great for a few months, then end up back in hospital because he can’t fight any sort of infection.

[BritishLiverTrust14 Moderator]

Dear MississaugaLiver,

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We also facilitate a range of virtual support groups for people in the UK 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:

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Best wishes,

British Liver Trust

[ColinH324]

Decompensated is when you have varices, bleeding, hepatic encephalopathy, etc. Compensated is when your liver is damaged, but is still performing all of its functions and no issues caused elsewhere.

I am in a similar situation, I had a massive variceal bleed from around my stoma in late 2022, have varices within my oesophagus, change to the lining of my stomach, mild hepatic encephalopathy, etc. Some teams only class you as decompensated when you develop ascites, but that can usually be pretty late on.

[MississaugaLiver in reply to ColinH324]

Have you ever been told you could become compensated again? I think hubby was hoping he could, but I can’t see that happening. Don’t want to burst his bubble but I want him to understand the reality of his situation.

[MississaugaLiver in reply to MississaugaLiver]

No he wasn’t ever told that. I was just reading posts here and thought there were all of these people saying how you could, but I suspected they weren’t as far along in the disease. For a guy that was healthy, active, never overweight and a jack of all trades around the home it’s been a challenge to get him to accept. It frustrates me that our healthcare providers (we’re in Ontario, Canada) never talk about Child Pugh or Meld scores. “You have cirrhosis” is the extent of their discussion. Maybe they don’t want patients to give up hope, but it seems he’s more upset each time he winds up back in hospital, as opposed to accepting life is going to be a challenge. Enjoy each day.

[AyrshireK in reply to MississaugaLiver]

Was transplant never suggested as an option with him remaining decompensated? I realise he is now some years into his journey and now potentially approaching the age where he is perhaps too old for t/p ........... don't know how the Canadian transplant system works but here in the UK they don't state that 70 is a cut off but it's around that where they suggest that advanced age brings with it additional risks and other health issues may be at play too.

My hubby was transplanted last year (at 63) after 12 years of ill health whereby he was initially decompensated (never any ascites just burst varices, severely deranged bloods). Listed for t/p 2014 but improved and delisted 10 months later. Sadly, going downhill again 2023 with very severe Hepatic Encephalopathy being his major symptom and then transplant last year.

If they haven't gotten to grips with your hubbies ascites in all that time transplant could potentially have been explored - but as I say I don't know how the Canadian system works.

Life with cirrhosis is a tough one, we have always said it's a roller coaster and you just have to ride the ups and downs, make the most of good days and write off the bad.

You should ask your husbands care providers to give you the scores and such like, you are entitled to ask for details. At every appointment we go in forearmed with a pad and pen on which we detail all current meds, symptoms and issues of concern and a list of all the questions we want answers to.

Katie

[MississaugaLiver in reply to AyrshireK]

Transplant has never been discussed. Problem seems to be that he’ll have a complete rebound. Bloods will all return to normal, ascites will disappear, varices will be insignificant in size and he’ll feel 100% normal. Then bang, he’ll get an infection of some sort and it will send him plummeting down again. He’d have to be in hospital a lot more and nearer to deaths door in order to have a transplant.

[AyrshireK in reply to MississaugaLiver]

I would be asking the question about it. My hubby never had half the issues yours has, bloods were fairly stable even up to the point of his transplant. It was his HE that caused my hubby to need t/p. Going from stable for 9 years to very poorly with HE in a matter of weeks.

[Kingbilly3 in reply to ColinH324]

I found that when they said I am now compensated it’s was simply because I was no longer yellow and my ascites went away, only thing I changed was my alcohol intake and not eating as much salt,

[ColinH324]

I don't have jaundice or ascites, but I do have mild hepatic encephalopathy and varices that bleed. Hate this disease!