British Liver Trust

Cirrhosis outlook

Hey everyone, I came across this thread on here which I found very helpful and interesting. Somebody wrote that people with cirrhosis can live long and healthy lives and it is not like being condemned to death it said. I am not sure of the site rules of sharing posts via screen shots on here so I will not post it. Could anyone confirm this please? I understand that everyone is different and would have different stages of cirrhosis once diagnosed but I would like to ask for peace of mind as I am uneducated on this matter as I could have to wait many weeks before I can get my first liver scan when my doctor refers me next week and, as always I’m thinking of the worst case scenario

Kind regards

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Depending on how severe your cirrhosis is yes you can a long life life post diagnosis of cirrhosis. Ok it might not be the same as before because symptoms do occur and like you say everyone is different and everyones experiences differ too. But if your liver is compensated and coping with the majority of its 500 functions then life goes on. It's when the liver becomes decompensated and struggling to fulfill even it's most important functions that it is potentially life threatening. There are members on here who have had a diagnosis for 20+ years, my hubbies consultant consistently tells us he has patients he's been seeing for 20+ years who are no where nearing transplant etc.

In my hubbies case he has had a diagnosis since April 2012 when he presented with late stage symptoms and a massive upper GI bleed. Since then he's had all his varices dealt with, aneurysms in his spleen dealt with leading to spleen loss, he was listed for transplant for 10 months but improved so much he was taken off the list, he has gained weight and re-built muscle. His blood results are normal and he is considered stable. His life isn't how it was - far from it - in that he can't work due to chronic fatigue, sleep disturbance, no longer drives due to confusion and difficulty concentrating, he has minor signs of HE for which he is treated with medication and has zero libido. He would struggle to be independent now and receives benefits in acknowledgement of this. BUT considering he was in a High Care unit back in April 2012 and nearly died he is doing ok in the grand scheme of things. He has managed a 4 mile walk out round local lanes today 'cos he was going stir crazy stuck in the house (he was previously a very fit and active long distance walker who took part in what today would be called endurance races or ultra marathons - 100 mile non-stop challenge walks and the like).

Life isn't at an end just 'cos you have cirrhosis and unlike in the past where the condition was though to be irreversible there is now scientific evidence to show that even a cirrhotic liver can recover to some degree - something has certainly improved in hubbies case and that without treatment (as he has auto-immune cirrhosis where is AIH is now deemed to be burned out ............ done it's damage in the past then gone dormant).

Best wishes for your follow up appointments.

Katie

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Thank you very much Katie, very nicely written and informative

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cirrhosis itself altho bad

it's the knock on effect when it falls it affects ALL the body to some extent and that tends to demand are attention

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Yes it does it's never ending

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Well I have been a walking talking ghost for over two years from Dr.s first expectations. Busy refurbing a house , which includes demolishing things , cementing plastering , carpentry , tiling , electics ( okay I have a death wish , lol) . Just started on the kitchen , demolished and putting in total new one. Yes I ache but am in my mid 50's . I can do more than most people of my age . Took me a long hard slog to get back to fitness. Now they say I will have a normal life expectancy, yes there is increased risk of becoming decompensated again , especially if I get another severe illness and need surgery . Diet exercise and some sensible supplements , as well as a positive mind frame , and being determind. I know others who have been around for 20/30 years with cirrhosis . It does depend upon why , and if you can halt or slow the progression , I think genetics play a big part too . My left lobe is as good as dead totally atrophied, my right well yep good old cirrhotic . Don't give up hope and work hard towards having the best and healthiest lifestyle too. by the way I am female and yes do cheat in my diet sometimes.

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Bless you

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That all sounds positive.I was given a ball park figure of 10-12 years with early curhossis, stage 4 of PBC then I had a bleed but it is still that figure of 10 years plus so I live. in hope.l am 68 so not that young! Stiffness and tiredness is probably more than friends who are well and unfortunately I have been told not to fly so holidays abroad are gone but a small price and the Uk is beautiful anyway..good luck everyone.

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Same here

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