decompensated cirrhosis: What is the... - British Liver Trust

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decompensated cirrhosis

Toffegirl profile image
13 Replies

What is the life expectancy for this as I have read 3-12 months and I have been going out of my mind.

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Toffegirl profile image
Toffegirl
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13 Replies
AyrshireK profile image
AyrshireK

It totally depends on whether mum continues to drink. If she is able to get sober and her condition is able to stabilize then no reason she can't live on. Sadly, if she continues to drink with the liver in the state it's in then the outcome will be the other way.

Try to avoid reading up too much - the internet is a hell of a place for doom and gloom. What is important is that mum gets proper care, looks after herself too and the liver can be quite forgiving. It is possible for a decompensated liver to recompensate and the person do 'ok'.

I don't know what age Mum is or if she has any other health issues but would transplant be an option? Obviously she has to get through this initial crisis stage first and then get well enough for transplant and have a proven period of abstinence of a minimum 6 months before she'd even be considered for referral for transplant assessment.

Concentrate on living life in the now, make the most of good days, look after mum and yourself and fingers crossed you will see some improvement. Don't dwell on the 'what ifs!'

Katie

Toffegirl profile image
Toffegirl in reply to AyrshireK

My Mum is 66 and she has completely stop drinking. I just don't see any improvement in her just yet.

Hillclimber72 profile image
Hillclimber72 in reply to Toffegirl

Takes time can be as long as six months

AyrshireK profile image
AyrshireK in reply to Toffegirl

It's going to take a good while & may indeed be a roller coaster with ups and downs especially in light with how poorly she is/has been. My hubby was diagnosed with decompensated cirrhosis in April 2012 (his not due to alcohol) , his condition stabilized enough for him to be taken off the transplant list in 2015 and he remains stable (but not symptom free).

At 66 she isn't 'too old' for transplant so if it became necessary and she is otherwise well enough (no other health conditions that would prevent the op) her age isn't going to go against her.

It's all about living now, looking after herself and getting as well as she can.

Katie

Toffegirl profile image
Toffegirl in reply to AyrshireK

I assures me 100% that she will not drink again, she stopped smoking and I know she can do this. Thanks for the feedback and I will stop looking on google x

DB50 profile image
DB50 in reply to Toffegirl

I was diagnosed with cirrhosis in May, 2019, and was certainly decompensated - jaundiced, some ascites, other symptoms - and stopped drinking completely, there and then. Not sure if alcohol caused it but I'm sure it didn't help. Certainly I drank too much. I was lucky in that I found it very easy to stop, others have great difficulty, I appreciate, it isn't trivial.

I am now (I think), asymptomatic, LFTs good, no ascites at last physical exam, other improvements. There was an improvement as soon as I stopped, and a big improvement in the first few months.

The most important thing, though, is that I feel I have my life back, and hope for the future. There's loads of help available, as other posts mention. I have enough medical knowledge to calculate a life expectancy, and understand the scientific papers online, but the values this gives vary from one person to another, so really I just concentrate on staying as healthy as I can. Please don't give up hope.

Richard

Hillclimber72 profile image
Hillclimber72

Katie is absolutely right first true life choice she will ever make.

That is to choose life and that starts with total abstinence there is help for her from professionals in helping people to give up , medication is available for that. I have a very simple approach to this if it’s medical speak to the professionals if it’s support you need , this forum has people with genuine experience to draw from. When I first got diagnosed in March i did the same looking online and it’s frightening. At no point was life expectancy mentioned when I have had meetings with my consultant so why hold what the internet says.

Journey starts now but with support it’s not as harrowing as you may believe.

Always available!

cammeag profile image
cammeag

Hi toffeegirl. I hope I can put your mind at ease just a little.

My liver failed in April 2019 and I was touch and go for the first three months when things sort of stabilised but my health was not good at all.

All in all it actually took me about one year before I even started to feel alive. The treatment I received and the medication I was given was very very bad, and unfortunately I did look at the Internet but I also prayed a lot.

I got my answers, my health improved, my mind cleared and for the first time since I was 22 years of age I can honestly say that life is precious, something to hold onto dearly and every day it’s a pleasure to wake up.

There is a life beyond decompensation and with patience and time and obviously the correct medication and food your mum will improve, so I really hope you can put your efforts into helping her get well as well as her making great effort as much as she can.

There are many lovely people on this forum and a few have had decompensated liver. If you have any worries or questions feel free to PM any of us, I am sure all are grateful to be alive and happy to help others in the same boat.

Take care.

Cat-B profile image
Cat-B

I was diagnosed with decomp 3 years ago, I worked hard on my diet and there has been no worsening, so cook all your food from scratch ( concentrate on high protein, high calorie and absolutely No salt) try to get out and walk, I had to use a walker, then hiking poles and now I can walk without aids. Go slowly ( remember the tortoise wins the race) Good luck

Artemis61 profile image
Artemis61

I can only tell you me experience, hope it helps. My brother was hospitalised with decompensated cirrhosis last October, given a 20% chance of survival. As a result of the amazing treatment from our local hospital, his liver function started to improve. He left hospital 7 weeks later with a basket full of meds and alive. He's been alcohol free for 13 months now and he's doing really well. I hope this gives you hope that things can improve. In the those dark days I was told to gather the family to say goodbye and now everyday I still shudder at what we all went through, but he got through it so there is hope. Good nutrition and not drinking alcohol are vital. Good luck ♥️

Toffegirl profile image
Toffegirl in reply to Artemis61

thank you for all your replies and sorry to hear you have/going through the same. These replied have made me feel a lot better and I will pass all these onto my dad too as he has lso been extremely worried.xxx

in reply to Toffegirl

If you are UK based also remember you can call our nurse led helpline on 0800 652 7330 10am to 3pm Monday to Friday.

AMDA26 profile image
AMDA26

Hi, so I’m a different case as my decompensated liver disease isn’t caused by alcohol but I have had it since I was six years old. I’m now 20. I’m not sure at what point it became decompensated but I’ve always had an enlarged spleen and portal hypertension for as long as I can remember because I had banding when I was 12/13. So I’ve had mine for 14 years and I’m still living a really good life. I’ve had a bleed and ascites a couple of times but generally I’m really healthy and live like everyone else if that helps!

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