i was diagnosed with ald two years ago... - British Liver Trust

British Liver Trust

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i was diagnosed with ald two years ago and stopped drinking straight away,haven,t touched a drop since then.i had ascites and odema

bulmer5 profile image
8 Replies

i don,t have ascites now,i have no yellowing of the skin,just wondered what the lifespan is for ald.

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bulmer5 profile image
bulmer5
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Bolly profile image
Bolly

Hi bulmer. To answer that Q it would help to know if you have been diagnosed with cirrhosis. And if so, have you been diagnosed with compensated or decompensated cirrhosis. There are statistics for survival rates for both, but it will help to know which you have as the 2 year survival rates of someone not removing the cause of the liver damage vary between 85% and 35% depending on what symptoms and blood test results you have.

bulmer5 profile image
bulmer5

i was diagnosed with decompensated ald

bulmer5 profile image
bulmer5

i had a scan 6 months ago and also doctor did his prodding of my stomach,he said there was no fluid.and no fluid on my ankles,he said i will see you in six months time.he also said he will give me a transplant when its needed.

Pensylvania profile image
Pensylvania in reply tobulmer5

Hi Bulmer5. I am in the same situation. I had ascites and oedema, and was developing the spider-like markings on my face and chest, I know I have portal hypertension as I had an endoscopy, but I stopped drinking a year and a half ago now, completely, and try to avoid salt, and other things like chicken skin and raw fish, but I don't know, if I have decompensated ald or not, because those symptoms have gone, and most of the time I feel alright, though, I do have what would appear to be a few symptoms of decompensated cirrhosis.

Its a question, (our lifespan) I havn't been able to get any clear answer on, -but then sometimes, I think maybe best not reading too much into it. I was told by the consultant at the time of diagnosis that if they saw I wasnt trying, I would not get on the list. -Which makes me think, it must be inevitable then...because I believe, through everything I've read/heard that its a progressive disease, all we can do is the best we can, and of course not drink..! Still, I'm glad I had the strength and willpower to stop, or I would probably not be here Now.. Well done in stopping too, If you were anything like me, it was probably not something you wanted to do. Hope all goes well with you. -And I heard just the other day of someone who had Cirrhosis surviving 25 years! Best wishes.

bulmer5 profile image
bulmer5 in reply toPensylvania

hi pensylvania,hope your ok,if you have had ascites and oedema then you have decompensated liver disease.decompensated means symptoms are present.is your stomach big?mine is but my specialist says its not fluid,its all the food ive been eating in the last two years lol,as when i was drinking i never really ate anything,i was 11 stone when i was admitted to hospital,now i am 16 stone.do you work pensylvania?

Pensylvania profile image
Pensylvania in reply tobulmer5

Hey Bulmer. Yes, am ok, thanks! Hope you are too. Well, when I first become ill, I actually looked pregnant., I was mega swollen, my ankles too. The Doc has since halfed my spironolactone to 50mg a day, which I seem to be coping with ok.

I've always been of slight build, and never really had a big appetite anyhow, but, like you, when I was drinking, I hardly ate anything much, and was 7 stone at my lightest, (I'm about 5 foot 6), my appetite is still sometimes practically non-existant, but I Do eat, I just do it in small quantities. When I do have a dinner as such, my stomach swells right out, and its more than just an 'after a big meal' kind of swelling, you know?, and so uncomfortable. I don't have the swelling at the moment and am about 8 and a half stone at the moment.

About the same time I was suffering with severe pain and numbness in both my arms and hands and told I had carpal tunnel syndrome, so have now had 'carpal tunnel decompression surgery' on both hands, just had the left hand done last month, so am still a bit sore. The oedema had made the pain worse, but they are fixed now, so thats one less thing to moan about! I havn't worked for a while, though I've just about worked in every sector possible! -Jack of all...!, but theres still not enough hours in the day, am Always busy!, I like to draw, and am given to flights of fancy with words too, a bit of poetry! I am working on 3 different 'projects' for family at the moment!, I find it really therapeutic too, Love music, couldn't live without That!

I do get really down and angry, at myself, at the world...but I try not to think about it too much, I'm not sure I would actually like to know how much time I Do have left, am 42, I miss alcohol still, but will never go there again, because I know it would be like pouring petrol on a fire, I've even thought about it, (getting drunk...just once..and no-one need know) But of course, I'm not That crazy, thankfully., because if I went There, I probably wouldn't be waking up again. My Doc says I've to think of it as "cancer in remission".

How about you? Are you working? Whats been on my mind, what does scare me is this 'hepatic encephalopathy'.. Funny huh, I genuinally thought that when I stopped drinking my memory would be great! A few times, lately, I've made arrangements or done something and Cannot remember it at all. Thats scary. Heard what I thought was an excellent line in a film the other day...'Yesterday is history, Tomorrow is a mystery, Today is a gift...thats why its called the present'! Prophetic yes?, I like the philosophy of that though. : ) Pensylvania x

Bolly profile image
Bolly

In gastroenterology the Child-Pugh score is used to assess the prognosis of chronic liver disease, mainly cirrhosis. Although it was originally used to predict mortality during surgery, it is now used to work out the prognosis, as well as the type of treatment and the necessity of liver transplantation. Its all about probability and statistics, rather than a definite, set-in-stone answer. To work out your score you need your bilirubin and albumin results, your INR clotting rate, and a yes or no answer to whether you have ascites and hepatic encephalopathy. A low score gives a patient an 85% chance of 2 yr survival and a high score a 35% chance.

en.wikipedia.org/wiki/Child...

Of course its not as simple as this. It also depends on things like whether the cause of the cirrhosis has been removed, the overall health of the patient, what happens in the future in the way of other illness/medications, any other pre-existing health conditions, nutrition, lifestyle etc etc.

Unless the cirrhosis has been diagnosed via liver biopsy, it will be worked out using the patients medical history/symptoms/blood test results, which wont be as accurate as a tissue biopsy.

I guess the only thing that is pretty certain is that someone with cirrhosis has shortened their life expectancy, but I doubt a doctor would put a figure to the number of years.

alecaloo profile image
alecaloo

Hi Bulmer5, Pensylvania... how are you guys doing now? I see that another 2 years have passed. My dad has been diagnosed with Chronic Liver Disease with ascites and mild esophageal varices. Have been getting him treated here in India. Dad says he's improving everyday. Hasn't drunk ever. Hope to see him with me for many years to come.

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