Recompensated?

[Moux1]

My husband has recently been discharged from hospital with odema in both legs which L read to cellulitis. His discharge letter read he was admitted with chronic decompensation of the liver. However after speaking to the liver nurse she mentioned that although he has significant scarring that his liver could be recompensated now , what does she mean ? I did ask but couldn’t fully understand, thank you

[Aotea2012]

It essentially means he’s symptom free. Cirrhosis is classified as compensated and decompensated. There is significant scarring of the liver but compensated cirrhosis has no symptoms like ascites and decompensated does. There are lots more complicated scoring systems and grading systems around but it’s good news if he’s recompensated. There’s a huge debate about whether there can be improvements to the liver when cirrhosis has been diagnosed, which I’m sure someone who better understands the debate than me will post about. There are many people on here, like myself, who have stopped the cause of the cirrhosis (alcohol for me), eaten in line with dietician advice and exercised who have improved sufficiently to live normal lives. So to me it’s pretty cut and dried, your liver, even with cirrhosis can improve. My consultant gave me a paper that had been produced by Southampton University which showed that in alcoholic liver disease the best predictor of clinical outcome wasn’t in fact how bad the liver was but whether the patient was abstinent after a month and continued along that path. His view is eliminating the cause is the important thing, the liver will do the rest.

[Moux1 in reply to Aotea2012]

Thank you for replying, pleased you are doing well. My husband has lost weight and muscle rapidly. He had mild ascites in his tummy 2months ago but none since. He has hair loss too but no varices or further ascites . His meld score is 6 which I know is good but the liver nurse said to take more notice of his Child Pugh which is B8 and UKELd 44. His kpa is 26.7 and Cap 281 , thanks for helping me understand

[Rshc]

We are in a similar situation. My partner was diagnosed on the 22.12.21 after becoming very very unwell and admitted to hospital where he underwent a medical detox. On Christmas Day a doctor took me aside and told me he had decompensated "end stage liver cirrhosis" - he said nothing more and I was in too much shock to ask. It sounded like a certain death sentence. Since then we thankfully spoke to other doctors with a little more bedside manner and have been told that over time the liver can re compensate - my partners bloods are improving slowly and although he feels dreadful because he has awful edema and fluid on stomach other symptoms have gone such as the awful bruising and nose bleeds and jaundice so we remain hopeful. Decompensated vs Compensated is diagnosed through symptoms rather than scans so compensated really means that the liver is functioning well enough even if it is damaged to live a near to normal life. The main thing to remain on the path to a return to health is to remove the cause - in partners case alcohol and eat a healthy balanced diet. It is a very scary place in the months after diagnosis but this is a good place to get some helpful information

[Moux1 in reply to Rshc]

I totally agree , initially it is very scary but after a lot of research and answers on here , it somehow becomes the new normal. Thankfully he hasn’t got severe symptoms and I say that with bated breath as I don’t want to tempt fate. I hope your partner continues to improve x

[Roy1955]

I am compensated and it means livers knackered but working so won't die just yet!Bit like owning a 50 year old car.

Treat it gentle and it keeps going but stay off the motorways.

And give it the best oil and fuel available!

[AyrshireK]

Cirrhosis is staged through symptoms present.

Stage 1 (Compensated) No Varices, No Ascites

Stage 2 (Compensated) Varices, No Ascites

Stage 3 (Decompensated) Ascites +/- Varices

Stage 4 (Decompensated) Bleeding (from varices), +/- Ascites.

When my hubby first went into hospital in April 2012 he'd have been classed as Stage 4 decompensated as he was bleeding from varices. Today he's probably sitting in Stage 2 (compensated) as he has no ascites (thankfully never has had) but does have some tiny varices.

Continuing to look after himself will help his liver recover to a degree and hopefully remain compensated though you do have to keep a quiet eye out for signs of any deterioration and get straight onto hospital if you notice anything. No need to absolutely obsess about it but just a quiet watching brief.

Katie

[Moux1 in reply to AyrshireK]

Thank you Katie , I have been obsessing to the point of nagging him constantly re everything he eats . I’ve calmed down a lot now and hopefully things will stay at this level or improve. Pleased your hubby is doing so well it must be a relief for you x

[AyrshireK in reply to Moux1]

Try not to obsess, yes learn about the condition, know what to look out for but don't micro manage. In our case hubby lives his life the best he can and I manage the health stuff. You have to learn to ride the roller coaster as you might say, some days will be up when hubby probably feels good, other days will be pants and you just have to find ways to pick him up a bit then or encourage him to rest or whatever is needed. Sadly you can't plan for what any particular day will bring and that's why I say you just have to go with the flow/ride the roller coaster. Make the most of good days.

We are now approaching the 10th anniversary of hubby being first admitted to hospital throwing up blood, yellow, deranged LFT's etc. etc. Two years of further banding with referral to t/p unit, eventual t/p listing and then improvements that led to delisting after 10 months. Various blips and scares along the way but yes he's doing 'ok' - not 100% fit but thankfully not at deaths door either. Last week we grabbed the opportunity to go to my parents caravan at Loch Lomond and spent 4 days cycling - hubby has really fallen in love with getting on the bike, it's not the same as his earlier Long Distance Walking exploits and he still mourns the loss of that side of him but the bike has given him some freedom and drive back which he had very much lost. We've both got manual mountain bikes which we enjoy riding but last week we took our new electric mountain bikes and had an absolute blast.

A cirrhosis diagnosis isn't the end of the world providing you do all you can to look after yourself and each other and make the absolute most of life. We are off up north to the Highlands next month in our touring caravan - after shielding for most of 2020 to now we have booked for almost a month away and we are taking our bikes. August we have booked to take our caravan and bikes to hubbies old stomping ground of North Yorkshire.

Katie

[Moux1 in reply to AyrshireK]

Fab that you are getting out and about , we are going to our caravan in Scarborough tomorrow and hope to enjoy and relax . It will be the first time we have been there since his diagnosis so I’m hoping we can go for short walks . Hope you have a fab time

[Rshc in reply to AyrshireK]

this is so helpful, I have not seen the stages broken down like this. So I think my partner is currently stage 3 although has only had 1 x varices - banded in Jan no bleeding but Ascites and Edema

[Rshc in reply to AyrshireK]

can I ask is Acsites a key indicator of decompensated?

[AyrshireK in reply to Rshc]

Ascites is one of the symptoms of decompensated cirrhosis although it sometimes occurs in other illnesses.

My hubby has never had ascites - but he fell into the decompensated bracket (Stage 4 - bleeding, +/- ascites).

I take it you've seen the BLT page on cirrhosis and the various symptoms. britishlivertrust.org.uk/in...

Katie