How can you tell your liver has become compensated after being decompensated?
A scan? Blood test? What physical changes do you notice?
I'm interested to know what experiences people have had with this as it seems to be quite a significant change/improvement...
Whether your liver is considered compensated or decompensated is determined by the symptoms present.
Cirrhosis is split into 4 sub stages (Cirrhosis itself being labelled F4 or stage 4 fibrosis).
Stage 1 Cirrhosis - No Varices, No Ascites (Compensated)
Stage 2 Cirrhosis - Varices, No Ascites (Compensated)
Stage 3 Cirrhosis - Ascites, +/- Varices (Decompensated)
Stage 4 Cirrhosis - Bleeding (From Varices), +/- Ascites (Decompensated)
In my hubbies case he went into hospital in April 2012 with a massive bleed from varices, he was jaundiced, had deranged bloods and was also suffering from malnourishment, muscle wastage and portal hypertensive gastropathy. Over subsequent couple of years he had 42 varices banded.
In 2014 he was assessed and listed for transplant but delisted in 2015 because his condition stabilized so much that he no longer fit the criteria for transplant. He had required a splenic embolization though after aneurysms were found in his splenic artery so in effect this killed off his spleen which had the knock on effect of improving his platelet count, blood clotting time and reduced his portal hypertension.
He's had no further varices requiring banding since 2014 (although in recent scopes some small varices have appeared). He has minor HE and some of the 'early and middle' symptoms of cirrhosis as listed on BLT site but other than that he remains pretty stable, walking or cycling every day and generally getting on with the best life he can lead with cirrhosis.
britishlivertrust.org.uk/in...
Katie
Thank you so much Katie for your very helpful response! I now have a much clearer understanding than I had previously
I was diagnosed with cirrhosis in May 2021 after years of social and home drinking -mainly wine and G&T
I was told I was decompensated as I had ascites, weight loss and severe muscle wasting - my weight had dropped to around 5 stone and my partner told me I looked like death being nothing but skin and bone.
I had seriously limited mobility due to the ascites and muscle loss and was reliant on walking sticks or a wheelchair to get about Fortunately I had none of the other symptoms
The ascites disappeared quite quickly after an initial drain and some diuretics - spironolactone. I had a fun time during that medication induced drainage period, not daring to stray too far from a bathroom and enjoying the delights of nighttime nappies for the first time since toddlerhood!
All good things come to an end as did my incontinence. I am now back in normal underwear on a lower, maintenance dose of spironolactone and hopefully will be able to stop it completely after my next consultant call in March
I feel really well and have regained my muscles and mobility, mainly thanks to yoga which I continue to do
I hated being unwell and incapable of independence and longed to be able to do all the things I love again. I started slowly, but surely, sometimes exhausted by my endeavours and simply kept going until finally, milestone by hard won milestone I have achieved more than I thought possible
I am now walking around 5 miles most days, often with our dog. I cycle when I can with just the one crash so far during an early attempt resulting from over enthusiastic use of the brakes! Luckily I landed on grass...
I have also managed to start running again with the aim of completing our local Race for Life this spring
I have achieved all of this through gritty determination and the love and support of my family, especially my partner who took time away from work to put me through a 6-week boot camp which really kick-started me on the road to recovery
Never underestimate the power of self-belief, coupled with a refusal to give up and a positive mindset!
These days i have a healthy diet (mostly!) and don't drink, although I did have some low alcohol (0.5-1%) drinks over Christmas. Luckily I am not tempted to resume my old ways and find I can now not tolerate full strength wine or spirits etc - it simply doesn't taste nice any more! Funny how the drinks I used to enjoy so much now taste like the poison they really are...
I don't seem to have any symptoms these days and feel better than I have for a long time. Does this suggest I could now be compensated?
I would like to believe that's the case as it would make all my hard work getting from death's door to nearly normal (for a young lass of 60!) feet so very worthwhile
Anyway I've reached the end of this somewhat rambling outpouring of my experience. It's great that this community exists to make the sharing of experiences possible
Thank you again Katie for your help and information which has given me great encouragement. I think it's brilliant your hubby is doing so well in the face of adversity - this fills me with real hope and strength for my own future!
E x
Reading your post with great interest. Has your Ascites completely gone?
I am not a doctor but I think it is fair to say if you were still decompensated you would not be able to do all the things you say you are doing, walking five miles, etc. Good luck. Cirrhosis is not a death sentence.
Gee, this is good to know. I asked my gastroenterologist if there were any stages to cirrhosis and he replied "no". I was surprised, because I was pretty sure I'd read that there were. So I said, "No?" and he repeated it again. I wonder WTH he'd do that. Sometimes I really wonder about Canadian doctors...
Hi Betty_Blue
I have just read your post as I have wondered if my decompensated liver is now compensated and found it almost like reading my own story as we have gone through almost identical situations ! I'm 62 and mine happened in 2013. I've been back working full time for a bout 4 years, on my feet all day and nobody can quite believe how ill and close to death I was with a huge varices bleed.
My biggest problems in life now are my sugar consumption and finding a new partner that doesn't drink. If you ever want to have a chat please feel free to message me, I live in N Yorkshire and agree fully with KenSimmons, cirrhosis is not a death sentence 😁
Totally agree tracyliz,it truly is a destructive disease,although after 3 years abstained I don't seem to have or really had alot of the bad symptoms with what was said decompensated,I was pleased to hear on my last visit I was compensated,keep very active,what I found a bit strange is that my liver specialist said regards diet and nutrition,just listen to my liver and it will tell you,always had a healthy diet so no change really,keep very active and just enjoy oil painting to relax just to steer away from bordem,also in the same boat as you how do you meet someone that doesn't drink.!! I've been divorced 6 years and feel it would be nice to meet someone in a similar boat without all the questions as to why I don't drink,and to be patronised by some people saying just have one,I know this site doesn't condone it bit it would be nice to actually meet people to sit and have a good chat as we would be all equals,without the lingering question but why.!!
P.s can't really say,but I'm from tup north.
Well maybe meet up for a cuppa then just as friends do ? I'm near Wetherby.
Do you know it would actually be nice to speak to someone without having to stay clear of a certain conversation as not so to be judged.i actually do have plans to visit my daughter who is at Durham university studying to be an astrophysicist,stars and stuff.!!so don't think it would be much of a detour,only Yorkshire tea.!! Thanks for your reply,didn't realise how cirrhosis can also have a massive impact on how we are judged,are we not still the same person.! 3 years this month without any form of alcohol,except one busy shop store assistant insisting I had alcohol hand gel before I could shop.how do you explain that away,stick to walking with my hands in my pockets maybe easier.Joke.!! Thanks again.
Well when you are coming up this way, give me a shout and we can meet up, would be nice, as you say , to just have a chat and be normal ☺☺
Hi,yes I will definitely give you a shout, think it would be nice to have a chat,not been going out too much just of late, not so much covid just some people think my problem is like a cold,will definitely be in touch,probably call on my way home from Durham,prob be a mid week day depending on daughters work load,but sounds good ! Thank you for reply.
Ok that will be good 😎
I have never been decompensated but I was diagnosed with cirrhosis in 2013 and my symptoms have steadily improved. I'm able to get a lot of exercise (currently doing high intensity interval training workouts every other day, plus my morning fast walk (about 40 minutes usually), and some light weights at home every other day when I'm not doing HIIT. No symptoms except being occasionally a little fatigued but that might just be boredom, lol!
Thank you for posting this question for it truly is, in my opinion, one of the most important questions ever asked on this forum. How, in fact, do you know that you are improving? What are the signs?
Cirrhosis is now believed by most well-read heptologists as a reversible disease. This is so in all but the worse cases. The fact that you can go from decompensated to compensated is itself evidence of a regression on some microscopic level of the cirrhosis to an earlier point. Sometimes the microscopic changes are not picked up by the available machines (Fibroscan etc) but your body is telling you otherwise.
Watch for changes. Especially these:
If you are able to exercise, when you once could not because of your liver disease, that is an exceptionally positive sign. Studies have found that patients with cirrhosis at a too-advanced stage simply cannot exercise because cirrhosis changes the hemodynamics of the blood addition to changing the liver. I remember having to stop twice and rest when I made the short trips to my neighborhood grocery store. Felt like I was going to pass out. But once my liver healed, I suddenly felt like moving more. I started to walk longer, faster. I started to do morning exercises looking at videos. I felt stronger.
If you have been losing weight, then you notice that you are able to hang on to your weight, that's a great sign of healing. Not all people with cirrhosis lose weight. But if you had been losing weight, then you stop losing weight and stabilize or even gain weight, that's a good sign. Weight loss occurs because the cirrhotic liver is called a "hungry liver". Cirrhosis changes the metabolism of food in the liver. It speeds up. Weight falls off you. You may start to look like a walking skeleton. One team of scientists found that the body of a person at this stage of cirrhosis wakes up with the blood markers of someone who has been starving for 3 days! So, if this was your cirrhotic pattern and you one day find that you are able to keep weight on, it's time to celebrate. Your liver is stabilizing. It's healing.
Blood work improves. You know the usual signs of a struggling liver. If your liver is inflamed, you'll see high ALT, AST, GGT, low platelets (depends of course on your case), ALP may be high, bilirubin may be high, you may have neutropenia (low white blood cells). As your liver heals, your numbers will normalize or trend towards normal.
There may be other signs. I noticed that my body hair came back to normal. I had lost my underarm hair (no need to shave).
Your fingernails may change. You may have lost that little white half-moon (the lunula) on your fingernails, and your nails may have appeared whitish instead of pink ("Terry's nails). As cirrhosis regresses, your nails may start to appear more normal. Mine did.
Your stools will go back to brown from white, as your bilirubin normalizes. By the way, having more bowel movements will improve your liver in general. One of the primary jobs the liver does for our bodies is to eliminate toxins. Regular frequent bowel movements helps to eliminate toxins (ammonia etc) which takes some of the workload off the liver. So eat those vegetables, drink that water and coffee!
This is a long journey for most of us. As others have said better than I have, stay positive. Stay connected to positive people. Put one foot in front of the other. We're walking together toward a good outcome.
I have listed some studies on the reversibility of advanced fibrosis and even cirrhosis as well as lifestyle changes to make.
Cirrhosis is a dynamic rather than a static condition:
"Newer research has established that liver fibrosis is a dynamic process and that early cirrhosis may be reversible." Tufts University Medical School, 2019aafp.org/afp/2019/1215/p759...
Coffee drinking improves liver disease: medicalnewstoday.com/articl... (this article cites a study from the BMC Public Health Journal)
What the color of your bowel movements says about your health:
collectivewizdom.com/BowelC...
Well thanks for that great info, I'm so chuffed I might have to crack open the non alcohol Gordons. I am nearly 9 years now and feel nearly as fit as a fiddle, not sure how fit a fiddle feels 😁🎻
Yes indeed that's really great information and so encouraging! I'll definitely continue being positive, enjoying exercise and a good diet for as long as...
Feeling energised!
Compensated or Decompensated
Compensated or Decompensated?
Has anyone gone from compensated to decompensated?
75 Kpa - compensated or decompensated.
How Long from Compensated to Decompensated?
