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Stage Four Cirrhosis - Mortality
Hello! I am a 58 year old female that was just diagnosed with stage four cirrhosis after a liver biopsy, numerous tests, being sick since having pneumonia in September, 2014, and being in and out of the hospital several times, the last time two weeks of sheer hell, kidney and liver failure. Long time wine drinker. Mainly they tell me what I don't have, but confirmed ITP platelet disorder and stage four cirrhosis I do have. My liver specialist and hematologist visits after leaving the hospital were bleak. This will continue to occur and I will die. I have completely changed my lifestyle, eat a natural diet and lean protein, no alcohol, counseling and PT for strength and endurance. Because of my platelet disorder, I am on 20 mg of prednisone, lowering slowly to be off in one to two months. I am also on Lasix, 80 AM, 40 PM. I am having weekly labs and my labs, other than my platelets, have all been in the normal range the past four weeks. Liver and kidney functions, AST and ALT billiruben, creatine, albumin, etc., all normal. I feel great. Never did have any pain. I have lost 70 pounds. My PCP is very encouraging and my cheerleader. My question, can I get better or stop the progress of this if I continue my current lifestyle? How can all my readings be normal if I am at end stage liver disease? My liver specialist said I have an idiopathic problem, when I get an infection, either my extreme sensitivity to antibiotics or the infection itself causes my organs to shut down. This hasn't happened since I quit drinking completely, so I think alcohol intake may have been a cause. Any guidance anyone can give me would be greatly appreciated. I want to hope, but want to be honest with myself too. Thank you.
sorry to butt in, but:
"If your cirrhosis has been cause by alcohol the good news is that alcoholic cirrhosis is usually reversible"
this is not true at all im afraid, F1 and F2 scarring are reversible, F3 and F4 are not and considered progressive in most cases. When alcohol is stopped the Liver can gain some function but its usually because excess fat will be removed and over time and some F1 and F2 may heal. Chances are if you have alcoholic cirrhosis you have fatty liver and all the scarring ranges at the same time awel as some alcoholic hepatitis. most of this will improve, but the scar tissue wont.
its not straight forward to confirm how much liver is actually left working, and MRE scan is great to map the liver. I cant see what use a fibroscan would be at this stage. some blood test can give a good idea. But as long as your LFTs are ok you in a "compensated" state, the problem is that over time the F3 and F4 will progress and slowly less and less Liver is left functioning.
At 58 years old, if you can get to a meld of 10 or under and stable, you might not have to worry about the Liver function itself, maybe the risk of bleed outs more because (sorry to be morbid) something else is likely to finish you off.
I also think you did pretty well to get to 58 after 30 years of 2 bottles of wine a day, thats about 140units a week, alot would get to end stage in 10 years of that
"If your cirrhosis has been cause by alcohol the good news is that alcoholic cirrhosis is usually reversible"
this is not true at all im afraid, F1 and F2 scarring are reversible, F3 and F4 are not and considered progressive in most cases. When alcohol is stopped the Liver can gain some function but its usually because excess fat will be removed and over time and some F1 and F2 may heal. Chances are if you have alcoholic cirrhosis you have fatty liver and all the scarring ranges at the same time awel as some alcoholic hepatitis. most of this will improve, but the scar tissue wont.
its not straight forward to confirm how much liver is actually left working, and MRE scan is great to map the liver. I cant see what use a fibroscan would be at this stage. some blood test can give a good idea. But as long as your LFTs are ok you in a "compensated" state, the problem is that over time the F3 and F4 will progress and slowly less and less Liver is left functioning.
At 58 years old, if you can get to a meld of 10 or under and stable, you might not have to worry about the Liver function itself, maybe the risk of bleed outs more because (sorry to be morbid) something else is likely to finish you off.
I also think you did pretty well to get to 58 after 30 years of 2 bottles of wine a day, thats about 140units a week, alot would get to end stage in 10 years of that
Hector, care to comment? I have had several MRI's that couldn't confirm cirrhosis. The liver biopsy confirmed stage four cirrhosis. My labs were 100% within the normal range Tuesday. CBC and CMP done. My platelets were up to 136,000, 4,000 under the low normal range. All docs were very happy. Since I have adopted this new lifestyle, natural foods only, lean protein, no alcohol, I feel great. PT is helping me with balance and strength, counseling is helping my depression, which is fairly non existent. Well, until I read your comment Ralph.... :( No sign of portal hypertension or ascites. No nausea or vomiting. No abdominal pain whatsoever. I had periods of sobriety throughout my life. I am trying to have a really positive attitude and not dwell on whether "something else is likely to finish me off." Maybe I am in denial, but I do feel really well, better than I have felt in years. I have a list of questions for my hematologist and liver specialist next week. I will post the results of those visits.
The Liver biopsy has a risk of a false negative, its is accurate for the positive, usually ,you will nearly 100% have F4 Cirrhosis.
Its great your labs have come back to normal, the Liver should improve for around 18 months. But the early improvement is usually eroded away as the F4 progresses, BUT this can take many years and SOME do actually stop it progressing.
Sorry for being insensitive, but something will finish us all off eventually, one or more of our organs will fail some day, I just meant that you might not have to worry about it being your Liver. Many many drinkers die and Cirrhosis is only found at biopsy
A good case of recovery is Andy Fordham the darts player, given just months to live ascites, jaundice, he stopped drinking and starting exercising, he still has his native Liver 8 years on and its doesn't look like he is struggling at all.
Your platelets being low are a sign of portal hypertension, now with your Liver stable you will have to concentrate on varices, you will likely need endoscopys to check and maybe some beta blockers to bring the blood pressure down to avoid a bleed. Also some people don't have much trouble with the varices, you could be one of them
Its great your labs have come back to normal, the Liver should improve for around 18 months. But the early improvement is usually eroded away as the F4 progresses, BUT this can take many years and SOME do actually stop it progressing.
Sorry for being insensitive, but something will finish us all off eventually, one or more of our organs will fail some day, I just meant that you might not have to worry about it being your Liver. Many many drinkers die and Cirrhosis is only found at biopsy
A good case of recovery is Andy Fordham the darts player, given just months to live ascites, jaundice, he stopped drinking and starting exercising, he still has his native Liver 8 years on and its doesn't look like he is struggling at all.
Your platelets being low are a sign of portal hypertension, now with your Liver stable you will have to concentrate on varices, you will likely need endoscopys to check and maybe some beta blockers to bring the blood pressure down to avoid a bleed. Also some people don't have much trouble with the varices, you could be one of them
Thanks Ralph! I will see what the doctors say next week. I am going to ask for a copy of my liver biopsy and my meld score. My platelets are almost normal. I have never had any bleeding that I know of. The liver doc said eventually he wants to do an upper GI. What does that entail? Outpatient? I am just taking every day as a blessing and trying to feel the joy in everything around me and my family.
yes get all the info you can, you get the bet results if you manage your condition. its not so hard to learn what the bloods mean etc, you will be an expert of your own health in months!
Because of the low Platelets which is indicative of Portal Hyper tension the liver doc wants to do a Upper GI endoscopy. He is looking to see if you have any veins that are starting to bulge because of the back pressure from the scarred liver. If there is any they can "band" them and give you beta blockers to lower your blood pressure. obviously a burst vein can be life threatening, so this is your immediate concern with you liver numbers so good.
the endoscopy is where they put a camera down the throat to check for veins bulging, I'll be honest nobody says it was fun! most are sore a few days after.
If you can imagine your average bath sponge, get a hose pipe and put it right up against it, the water would flow through all the holes and the hose pipe wouldnt start to bulge or build pressure. Now replace the sponge with a brick, the water would not be able to flow very well and the hose pipe will start to build up pressure and bulge. thats pretty much what happens with a scarred Liver and the veins attached to it.
Although there is enough left of your sponge to produce enzymes and proteins you still have scarring that is restricting the flow through it.
Because of the low Platelets which is indicative of Portal Hyper tension the liver doc wants to do a Upper GI endoscopy. He is looking to see if you have any veins that are starting to bulge because of the back pressure from the scarred liver. If there is any they can "band" them and give you beta blockers to lower your blood pressure. obviously a burst vein can be life threatening, so this is your immediate concern with you liver numbers so good.
the endoscopy is where they put a camera down the throat to check for veins bulging, I'll be honest nobody says it was fun! most are sore a few days after.
If you can imagine your average bath sponge, get a hose pipe and put it right up against it, the water would flow through all the holes and the hose pipe wouldnt start to bulge or build pressure. Now replace the sponge with a brick, the water would not be able to flow very well and the hose pipe will start to build up pressure and bulge. thats pretty much what happens with a scarred Liver and the veins attached to it.
Although there is enough left of your sponge to produce enzymes and proteins you still have scarring that is restricting the flow through it.
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Great that your labs are holding!
You will need to get the scope, the last thing you need is a bleed out that could have been avoided with a scope and banding. you may have none at all, some dont.