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What to look for towards the end...

I am dying here racking my brain trying everything I can to get more information on my father's problem. I am absolutely certain he is in liver failure and he refuses to go to the hospital. I finally got so frustrated yesterday I called the paramedics out in hopes that them telling him would make him understand the severity of his situation; they looked him over and confirmed that he definitely is suffering from liver failure. I'm not sure how long this has been going on but he said he hasn't felt well since August, I don't live with him but I was visiting a week ago when I noticed how yellow his skin and eyes were, I don't know how long he has been like that. He has lost a lot of weight and his belly is very distended and tight, his feet are swollen, he talks very slow and moves even slower, he has lost almost all control of his bladder; he is basically a 90 year old in a 48 year old man's body. He told me that he hadn't had an appetite for a week or so but was just beginning to get it back. He said he had a small red bump on his arm that looked like a pimple and after he picked at it he began bleeding and had probably lost near a pint of blood before he could get it to finally stop. He says he has no pain. And even after my begging and pleading, the paramedics begging and pleading; he WILL NOT go to the hospital. So I guess I'm here to ask anyone else who has experienced this themselves or with a loved one what kind of symptoms they were showing towards the end and based on these symptoms how long he may have?
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Avatar universal
My mother has both hepatitis c and cirrhosis.   She has had ascites a few times but the dr was able to stop the bleeding with an EGD procedure.  She was diagnosed over 10 years ago which I am told is well beyond the life expectancy of someone with hcv.  Over the last 5 years her condition has slowly gotten worse.  She has these horrible sores on her legs and struggles to get around in her wheelchair.   She has developed a severely distended abdomen to the point of looking like she is 9 months pregnant with triplets or something.  And she is getting more and more forgetful,  confused, etc.  Her dr told her 6 months ago that she had between 6 months and a year but when she saw him last week he said he didn't know how long she has.  The truth of the matter is that none of us know how long we have and the only one who does know is God.  At this point with my mom, we have been concentrating on making her as comfortable as we can, doing what we can, spending as much time as possible with her, and most importantly making sure she is prepared and ready to enter into an eternity with God in Heaven.  I believe that we all should be prepared for our passing at all times because we never know for sure when our time will be up.  My husband's grandmother was given 6 months with brain cancer but she lived more than 20 years after that!  Doctors can give a general idea and sometimes they will be right but only God knows the day and time for certain.  I hope and pray that anyone reading this is prepared for the future.
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Avatar universal
There are things that could be done in a hospital that could make him more comfortable as time goes on, for example medications to help with edema and ascites, or medications to help with his hepatic encephalopathy (HE=cognitive changes).  It's hard for us, not knowing exactly what stage of decompensated cirrhosis your dad has, to be able to say how long he'll go on like this or how long before he begins to suffer and have pain or pass away.  End Stage Liver Disease (ESLD) is a very difficult disease, and it's course seems to be fairly unpredictable, in terms of how long.  Someone more knowledgable than me may have some more information, but I personally know of 3 people who have passed away due to liver failure.  One had been diagnosed with ESLD 18 months prior to passing, and during that period had edema and HE, developed ascites in the last 2 months, and had bleeding varices (bleeding from the esophagus) in the last 24 hours before passing.  Another had been diagnosed with cancer, but also had Cirrhosis.  After completing successful cancer treatment, he developed edema, HE, and ascites.  That continued for about 3 months with various treatments.  At that time, doctors said there was nothing further that could be done, and he went home with hospice care, his liver failed, he had bleeding esophageal varices, and passed away within 7 days.  The third person followed a similar course as the second.  She had been diagnosed with cancer and had gone through several unsuccessful treatments over a period of 18 months, became very ill, and had hospice care at home when she was told there was nothing further that could be done.  At that time she had ascites and edema.  I'm not sure about other symptoms.  I'm sure cancer played the largest role in her death, but ultimately she passed due to liver failure, and it was about 4 days after hospice came into their home.
It sounds like your dad has two of the major symptoms of ESLD:  ascites and HE.  From what I have read on this forum and on line, people can go on a long time with ESLD.  It just depends on how decompensated his liver is (how poorly it is functioning and doing it's job).  It also sounds like his blood isn't clotting the way it's supposed to.
I think that you will see an increase in fluid retention (ascites/edema), more loss of mobility due to fluid retention, and an increase in weakness and fatigue due to not being able to eat and get nutrition from food.  As the liver fails, I think you will see an increase in cognitive changes (orientation, alertness, perhaps eratic behavior, etc.), and/or he may spend more time sleeping than awake, or he may slip into a coma.  It's very possible that he may have a bleeding episode.  
That's really all I can add.  My heart goes out to you, because any or all of these life threatening events could happen and without hospice care or without being in a hospital, he will probably be in a great deal of pain and suffering, and it will be extremely frightening and difficult for you.  
It's impossible for us to guide you and say how long.  It could be days, weeks, or a few months.
Keep us posted.  Let us know how you and your dad are both doing.
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1840891 tn?1431547793
I'm so sorry for what you are going through now. I know I will eventually be in this situation with my younger brother, who is 58 and has been an alcoholic for the last 30 years. He also refuses to go to a doctor - he simply doesn't want to stop drinking and doesn't want know about his own health status, even though he has been through this whole thing with three of his closest friends all dying of alcohol-induced liver failure. It's very difficult to watch someone you love destroying themselves, but there is truly nothing anyone else can do if they don't want to save themselves. In your father's case, he might be past the point of saving, but even so could still be helped by at least getting something like home hospice care if he doesn't want to go to a hospital. Personally, I vacillate constantly between being sad and sorrowful about my brother's weaknesses and the impending doom being brought on by them, and being angry as hell at him for doing this to himself and to those who love him. Some days I'm filled with compassion and want to try harder to help him, and other days I feel like turning away and refusing to even watch this show. I just wanted to let you know that you are not alone.
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5611452 tn?1370971104
I am very sorry for what you and your father are going through.  In the end we all have to make our own choices and there is nothing anyone can really do to change that.  I can't imagine the pain and distress you are feeling not being able to do anything.  It's a blessing that he is not in pain.  I don't know how long he has but I do agree with rivll.  I can't really add much to what's already been said.  I wish you and your father the best and I will keep you in my prayers
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Avatar universal
I am so sorry for what you and your father are going through.

If he refuses to go to the hospital there is nothing to be done. All the hospital can do now is make him comfortable for his last days or weeks.
It really is not possible to say how long he has, but from your description of his condition it doesn't seem like he will live for much longer.

It is a blessing he has no pain and if he can be made comfortable at home, I personally think it is preferable to spend one's final time in the most comfortable and familiar surroundings.
Your local hospital should have access to hospice care, where a nurse will come to his home and make sure he is on medication for his symptoms and pain free. If you need help with that, send me a message and I will try to assist you.

All the best to you
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