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Old 09-28-2008, 03:18 AM   #1
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querina HB User
how much time with end stage liver disease

how much time with end stage liver disease

 
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Old 09-29-2008, 01:56 PM   #2
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Re: how much time with end stage liver disease

It all depends on what level of "compensation" one has and what you actually mean by "end stage". There are people with compensated cirrhosis who live for many years. Their liver is scarred, but they don't have all the manifestations of chronic liver disease (like fluid in the belly, jaundice, weight loss, fatigue, lack of appetite, confusion etc. etc.). These are, for example people with Hepatitis C associated cirrhosis who undergo treatment. The Hepatitis C is eradicated and while the person's liver will likely never be normal again, it can heal to a certain extent.

On the other hand, if you have someone who is very "decompensated"...in other words has a lot of fluid in the belly, has fat, distended veins in the esophagus which are prone to bleeding, is confused, is yellow etc. etc. etc. this person is clearly a much different story and is overtly showing signs of chronic liver disease. This is the group of people doctors actually call "end-stage" liver disease. Often once you are at this point you have weeks to months to live. Most people are somewhere in between.

 
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Old 09-30-2008, 12:27 AM   #3
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Re: how much time with end stage liver disease

cgranulomatis, my friend's father has some sort of liver disease and his symptoms seem to match what you described in your first paragraph i.e. (like fluid in the belly, jaundice, weight loss, fatigue, lack of appetite, confusion etc. etc.). His belly is bloated and he is also completely yellow, including the whites of his eyes, and itchy skin which prevents sleep. The doctors aren't sure what it is, they say it is "toxic hepatitis" and they are treating him with cortisone but he is not improving. He has had sonars and a whole host of tests. What is the correct treatment based on the above symptoms? I know it is not easy to diagnose like this, but these doctors seem to be treating the symptoms and not the cause. They have ruled out gall stones and cancer.

Last edited by wayne2208; 09-30-2008 at 01:08 AM. Reason: Additional information

 
Old 09-30-2008, 03:49 AM   #4
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Re: how much time with end stage liver disease

thank you, for replying it's my mothes who has end stage liver. And by the sounds of it, it is the end then, she has all of the symptoms that was in your 2nd paragraph the jaundice,stomach distended, weight loss, no apppetite, always wanting to sleep, she has both hepatitis and cirrhosis and also asophagueal varrisies ( sorry about spelling ) that have been banded alredy about 8yrs ago she does have a some fluid on her tummy the doc was going to take a sample yesterday. They wont give an educated guess of her life expectancy just percentages and shes been given 48% chance. iam at my wits end.

 
Old 10-01-2008, 06:25 AM   #5
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Re: how much time with end stage liver disease

Hi Wayne,

First of all, I can't offer any diagnoses on a forum like this because, well, making a diagnosis based on symptoms alone without seeing a patient is impossible.

Second, the only thing one can glean from the symptoms you mention are the fact that the person has liver disease. Regardless of which liver disease you have, if the liver becomes sufficiently damaged and is not able to function properly, you will get those symptoms. So for example, if someone has decompensated cirrhosis from Hepatitis C vs. someone having decompensated cirrhosis from alcoholic liver disease, the basic symptoms would be the same.

In your friend's father's case, he probably has cirrhosis, and unless the cause of the cirrhosis is reversible, the only thing you CAN do is treat the symptoms. People nowadays often become untrusting of doctors and say what you said, "I feel like the doctor is treating the symptoms not the cause". While as a general principle treating the cause of something is better than just the symptoms, often you don't KNOW the cause. This happens a lot with chronic liver disease. I assure you the people who are looking after your friend's father are trained in internal medicine +/- gastroenterology/hepatology. They know what they're doing--especially given the fact you have told me they have put him on steroids. Does your friend's father drink alot of alcohol? Prednisolone is sometimes used in the treatment of alcoholic hepatitis. It is also used in a condition known as autoimmune hepatitis (though that usually presents in young women).

In any person who presents with signs of chronic liver disease, they will get a minimum workup to rule out the following diseases:

Hepatitis B and C
Alcoholic liver disease
Wilson's Disease
Hemochromatosis
Alpha-1 antitrypsin Defiency
Autoimmune liver disease
Primary Biliary Cirrhosis
Primary Sclerosing Cholangitis
Drug induced liver disease
Structural liver problems (e.g. Budd-Chiari syndrome)
Non-alcoholic Fatty Liver disease

I might be forgetting something, but you get the idea. The above conditions are ruled in/out with a complete history/physical, battery of blood tests and liver imaging via ultrasound. Unfortunately even after all of this, a cause is not found. These are sometimes known as cryptogenic cirrhosis, though many people nowadays think that most cryptogenic cirrhosis is actually Non-Alcoholid Fatty Liver Disease (NAFLD).

 
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Old 10-02-2008, 12:25 AM   #6
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Re: how much time with end stage liver disease

Thank you for your comprehensive reply. Unfortunately they have discovered that it is a very rare and untreatable liver infection, my friend cannot remember the name. Apparently his dad will lapse into a coma very soon and then he will have 2-3 weeks. Thanks again for your input.

 
Old 03-11-2009, 07:05 AM   #7
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TracyJ HB User
Re: how much time with end stage liver disease

I just found out a few weeks ago that my Dad has end stage liver disease. My dad also has advanced prostate cancer so there is no chance for a transplant. It is so hard not knowing how long you have with someone. He has ascites (fluid in the abdomen) about 20 liters so this has built up over time and he has always had what we call a beer belly so we never paid attention to the extra weight gain until he had a shot in his belly for his cancer treatment and the area was leaking fluid for days. His is caused by alocoholism. Anyway, he sleeps alot, his eating habbits have changed and the edema in his legs is getting worse. He is on diaretics to help with the fluid as well as gets 2 liters removed every few weeks. I just don't know what is next. He lives with me so I am able to care for him. I am not sure if it is time to get hospice in or not. He is still able to do things on his own so I do not want him to feel that I have given up on him. Any thoughts.

 
Old 11-24-2011, 01:42 AM   #8
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Re: how much time with end stage liver disease

Quote:
Originally Posted by querina View Post
how much time with end stage liver disease
If it is truly endstage, with minimal hepatic function, ascites, encephalopathy, edema, coagulation issues, etc.? As much as a year or as little as today (without decisive medical intervention)

 
Old 02-18-2012, 11:19 AM   #9
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Re: how much time with end stage liver disease

I am in end stage liver desease. I contacted hep c 25 years ago after a transfusion when I bled out after a ruptured eptopic pregnancy. Hep C was not a recognized desease at the time. It was months later when the hosp. contacted me saying I may have recieved tainted blood. Well, I did. The good news is I knew, so I have always been diligent about taking care. 4 years ago I did the enterferon treatment, tuff stuff, and I have been Hep clear ever since. Bad news is the liver had progressed to end stage. At the time I was too sick for transplant. The risk was greater than the benefit. Docs said maybe three months to live. This is almost 4 years later, I am still here. In that time, I actually have been too well for transplant. It is rediculous. Too sick, too well. I am now going rapidly down again, and it does happen rapidly, I am hoping to catch that window. I see transplant/liver doc on the 23rd. I am praying I am sick enough but not too sick. Alot of prayer, diligence and wiil power have kept me alive and very functional. Docs don't understand why I am still alive. I have asked how long so many times, I don't ask anymore. Now I am so tired and weak, I don't even feel like fighting anymore. Point is, I don't think there is a right answer to how long. I would sure like to know too.

 
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Old 02-24-2012, 05:42 AM   #10
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Re: how much time with end stage liver disease

Hey there,

I wanted to post because I am going through so many emotions right now. I found out early this week that my ex brother in law passed away from liver failure. He was 35 years old. Long story short he had been in my life for so long, More than half my life and after the divorce I did a really terrible job keeping in touch with him and feel so guilty that I wasnt there for him in the end.

His parents were both alcoholics so it was in his genes. While he was with my sister he would drink beer, probably a couple a night but never anything stronger - no one ever really saw it as a problem because he would never be completely intoxicated or mean or anything but beer was his drug of choice. After his death we found out he had switched to vodka about a year or so ago.

Here is where my confusion comes in. He was taken to the hospital last week and within 2 days he passed away. His skin was yellow, he was confused and he was bloated. After doing some research it seems like this is not something that just happens over night. He knew he had to be sick right? the people he was living with had to know too right? by the time they took him to the hospital he hadn't urinated in 3 weeks. I'm struggling with the fact that I don't know if anyone tried to help him or not and i feel so terribly guilty for not reaching out to him and trying to help. My heart aches thinking he was sitting in a home dying while people watched. Is it strange that he was never taken to the hospital prior to this? i know most addicts don't want help or to get better but i really hate knowing things could have possibly been done to help save him if someone would have spoken up sooner? maybe this is me trying to put the blame somewhere. i dont know.

I'm grieving and my thoughts are all over the place - just something seems so strange about it all. it happened so quickly -for me and his family. no one really knows what his quality of life was like leading up to this death. he was living with a girlfriend who was a hospice nurse and her parents which makes me even more sad that these people should have known he was sick. I just have so many questions. So many things i wish i could have said to him. My heart hurts.

 
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