decompensated to compensated

[Kingbilly3]

hi as you know I have had decompensated cirrhosis diagnosed march 23, in January 24 I had a bleed from varices and have had 7 bands, next camera august, my next scan on liver is 18th June so next week, has anyone had this and after there liver went to compensated ? Thanks

Leanne

(King Billy is my greyhound! I use his name for luck!)

[AyrshireK]

My hubby went from decompensated after a massive variceal bleed to compensated a wee time later. He had 42 varices banded and was on the transplant list for 10 months in 2014/15.

He has continued to have regular endoscopies and the 6 monthly scans which are routine in any cirrhosis patient because regardless of compensated/decompensated state there is a slightly increased risk of liver cancer in a cirrhotic liver so the 6 monthly scan is to keep an eye out for any changes - lumps and bumps - which they can get onto dealing with a.s.a.p. Plus the scan checks for ascites, portal veinous flow and changes in other organs.

Sadly, hubby finds himself back on the transplant list now after a deterioration in his health - mainly HE related though bloods are also going worse.

Katie

[lonmallin50]

I have read on here a lot of people gone back to compensated mostly the ones I read is when drink was there problem and they gave up a good diet and exercise livers can repair if the root of the cause is stopped or cut down good luck Lon

[Rshc]

When I first found this site at the start of 2022 when my partner was diagnosed with decompensated cirrhosis I asked exactly the same thing. My partner was very ill, being drained every week, he was in and out of hospital and eventually on the transplant list. But over time he slowly got better, he isn’t even on diuretics any more and his bloods are almost completely normal. He was removed from the transplant list over a year ago.

So yes, as long as you look after yourself it’s definitely possible to go from decompensated to compensated

[DaveQ67]

Hi,

Always sceptical of someone called king billy …. As I’m from the green half 😃

I was diagnosed with decompensated on June 23. I was told over the phone I was compensated over the phone due to my information I gave the consultant on how I felt, my bloods improved and stabilised. Mine were pretty much through the roof on everything with the exception of platelets, which were 41.

Along with how I felt and my bloods all deemed normal except ALP which fluctuated but never returned normal range. I was told I’m compensated.

I got very little from my US in March. That was my first one since diagnosis.

I wish I asked questions such as how much of my liver was scarred etc. I’ve never been told. Due to my diagnosis being in hospital I never had a fibro scan.

I got very little info other than no lesions and focus switched to my gall bladder where I have a polyp.

I have my consultant next month. Where I have a lot of questions. As I have never been told anything other than what I’ve mentioned here.

My understanding is ask the person doing your US for how it looks. Compensated I believe is when your functioning as if normal with no symptoms. Or stabilised at least.

That’s my understanding anyway. I could be wrong.

Good luck for next week.

[AyrshireK in reply to DaveQ67]

You are unlikely to get a sonographer to comment on your scan at the time of scanning - many arn't qualified to do do snd the results have to be reviewed by radiography doctor and compared with any previous scans to enable the report to be written.

Symptoms and bloods are what determine compensated/decompensated and the scan is to monitor changes in liver and other organs.

Katie

[DaveQ67 in reply to AyrshireK]

Okay thanks. I was really keen to see if there was any improvement at all on my scan when I had mine done.

That’s good to know, I was hoping they could say, slight improvement or the same.

My letter stated. “ your scan is still in keeping with the known cirrhosis” pretty vague. But then again pretty vague sums up my whole experience for the last year.

[AyrshireK in reply to DaveQ67]

That's basically all hubbies scan reports have said for 12 years. Cirrhosis is cirrhosis and the scarred bits rarely improve.

[Kingbilly3]

my main concern is that when I first took bad last year I was diagnosed with alcoholic hepatitis then a few weeks later after scans ect was told decompensated liver as well, I don’t know if this makes any difference at all, also when I had bleed in January I had , dizzy spells, really bad headaches, could not sleep more than 2 hours a night and terrible palpitations and black tarry stools for 3 weeks before they found the bleed, but last full now I have had every symptom apart from the stools so am concerned about that and a trip to ae is a 20 hour wait sometimes, x

[DaveQ67 in reply to Kingbilly3]

Sounds like you’ve had a tough time.

I’ve tried, although not always been able too. Try to take the attitude that regardless what any scan shows, that all I can do is to try and take care of myself as best I can.

I’m prepared for hearing bad news as at times it feels it will be inevitable.

I’ve been lucky so far. No issues, but compared to most I’m in the infancy of this. I think in terms of your scan, little news is good news I suppose.

I’ll keep my fingers crossed for you

[AyrshireK in reply to Kingbilly3]

Alcoholic Hepatitis has many of the same symptoms as decompensated cirrhosis so they gave you that diagnosis before a scan obviously identified that the issue was more serious and that you did indeed have scarring hence the later diagnosis of cirrhosis.

You've got your next monitoring scan next in a few days time & your consultant will receive the report of that and hopefully if you've established a rapport with doctor or his/her secretary you should receive a copy - certainly something to ask for going forwards. We have always received a copy of hubbies scan reports and endoscopy reports (never any blood results though).

If you are having fresh symptoms you should try and get in touch with your consultant for advice or an experdited appointment. When is your next clinic appointment due?

Don't sit on symptoms especially if they are akin to when you had a bleed. Get seen. Even your GP should be able to speed up your passage through hospital. If GP feels you need to be reviewed at hospital they can ring ahead and book you in to either A&E or more likely a Combined Assessment Unit.

Katie

[Kingbilly3 in reply to AyrshireK]

My hospital is a nightmare even with help off my gp, I also never get blood reports only scans ect, am at liver specialist 10th July so long wait but see what happens x