I'm not sure whether anyone will be able to answer my question but here goes.
I was diagnosed with liver cirrhosis in 2014 due to excessive drinking, at my worst I had a varical bleed (which was banded) ascities (had 3 litres drained), Adema, severe jaundice (billarubin of 481) elevated levels in all my LFTs my INR was 2 my platelets were around 38. I have been absent now for the over 18 months, continue to have check ups, my liver function test's are now all within normal range apart from my platelet levels. and feel normal apart from the fact I get a bit tired and I can't have kids. On my scans my liver is still enlarged and cirrotic and my spleen is also enlarged. When I've asked my consultant about prognosis or how bad my cirrhosis is I never get an answer I understand.
Can anyone give me some honest info?
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Miss_C78
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I think "no" is the safest answer. You need to go back to your consultant, definitely with a family member or friend, and ask your questions again. Be willing to be persistent and explore all options, including transplant (which you don't mention).
For me, I knew I had Hep C and some early signs of cirrhosis, but when I got sober, I assumed all would be well. And, indeed, it was, 13 months prior to me getting sick, my liver scans all came back fine.
I had 3.5 years clean and sober when I suddenly started putting on weight. My legs and feet were swollen also. I tried exercising more, eating less, all of it.
One day, after 4 months of discomfort, pain, and not sleeping well from my distended abdomen I started having chest pains. I went to the ER and was admitted straight away. The next day they did a drain..I think mine was also very small, 3 or 4 liters.
They also checked for varacies, did other procedures etc. I was back in 5 days later for another drain. Finally, week three I saw the Consultant and they delivered the bad news. End stage liver disease, and the ascites meant my liver was decompensated.
The thing is, all liver disease is different. It effects everyone in many ways.
The doctors can only give you so many answers, as they have to go by what your liver says.
For me, I did pretty well after about 9 months or so, but then got ill again. Started getting drains up to 21 liters, and more frequently, at the end, every 10 days.
Whats funny is that in spite of the ascites, my liver tests actually looked completely normal. So weird.
but, by now I was on the transplant list, and was blessed to receive one last October.
This is what I did, I wrote down all my question and insisted on answers.
Another thing..sooo important, do not google liver disease, ascites, etc. Why? There a lot of bad info out there. Also, try and not look at images of people's livers that were diseased.
I was told that This site was good for answers (by the way, it really is! ) And also NIH.
You can also check out hospitals that specialize in liver disease and transplants, for instance Addenbrookes in Cambridge (that's my hospital) and there are a couple of other great one in the UK and US.
I know your scared..I sure was also. It's a very scary thing. Also talk to your sponsor about working step one two and thee on your liver disease. I did and it really helped.
People can go downhill very fast or very slow. You may be ill for 20 years or three (like I was) before you get put on the transplant list, if your approved for that after assessment.
Also, people on here like Mister X and Bolly, etc. have a lot of really good information! And here is a great place for support.
By the way, all those tests and numbers can change weekly. Try not to let them make you panic.
Being exhausted is completely normal. The liver is in charge of energy. Its the hardest working organ in the body, and is in charge of, or works on over 500 things! Body temp, energy, its the main filter for everything (thus the ascites)
If you can, try and walk or exercise. Also stay away from sodium, table salt, and pre prepared foods. In other words, fresh fruits and vegs, etc. is best. (as boxed or frozen meals, etc can often have a tone of sodium and chemicals your liver may not be strong enough to fight)
Hi kimberely just thinking of you and wondered if all had calmed down with transplant?last time i saw your post you were on and out of hospital with probs
Is it all okay ???
Im still waiting to b bad enough for asessment...the consultant said they wanted to catch me before i tipped over and hoped that reassured me?!?..cant say it did but can kind of see where they are coming from
Not sure if things are changing, this week have had the nausea worse ..more like when i was first diagnosed...when i was pregnant with glandular fever.also feeling cold a lot of time ...like thermostats gone completely.struggling to know what to eat as dont fancy much!!also weeing a lot more
Having bloods done tues by gps but not sure they know what to do with me.
Are you managing to get out or are you still not well enough?
Great answer. Like you say it could be 20 years it could be 3 it may never happen. But it's important to understand that if you're staying sober and trying to look after yourself you've got the best chance. Also at some point its likely you'll be referred for transplant assessment.
my husband was diagnosed in 2014 with hepatic cirrhosis of the liver and he has stage 3 chronic kidney disease now but I am like you I can't get an answer about anything he is on lactulose and rifaximin but he hasn't even been put on the transplant list yet he has been hospitalized twice for hepatic encephalopthy but no one will tell us anything.
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) And also NIH.
Answers at last and amazing good news!
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