New user...need help...maybe questions answered....end stage liver disease

Hi Marrisa - I just had to reply to your post.  Feels like every word you are saying describes my situation with my dad!  I've been downloading and researching for my dad (end stage liver failure) who thinks somehow I am the only one who can help/save him (while I know this is not the case; but I'm all he has).  To be brief, he is 54 and drank most of his life.  He is now abstinent and so sick he cannot walk most of the time.  He won't go to hopital as of the past few days (though he needs to) and insists on continuing to drive from time to time.  I'ts all so frustrating and I just don't know what the best course of action is.  The doctors are pretty much refusing to treat his ascites/hernia and he is livid.  It seems they see no hope and yet aren't being upfront with him, so he thinks there is some miracle surgery.  He is very cranky and stubborn which makes it hard to help him.  We were estranged until he went into the hospital and was diagnosed last November.  I feel like my hands are tied in so many ways.  Tomorrow I am going to take care of the cooking, cleaning, lawn, errands and get a better handle on the current situation.  He says he cannot walk and doesn't want me to call or come to see him until tomorrow.  Like you, I just wish i could get a handle on what he truly needs right now and what I or anyone can or should do for him.  It is just so helpful, as you know, when you come across someone else going thru the same pain and frustration and realize you are not alone.  I am praying for you and your Dad and family and will continue to look for your updates.  Hang in there and you have my best wishes.

Hello everyone, thought I would update all you kind people on my Dad's current condition.

He is still alive, amazingly enough, with the sepsis infection STILL. Most of the nurses and doctors we talk to say they cannot believe he is still alive, especially since developing the massive sepsis infection (same date as my last post)

But he is unfortuantly (or fortunatly depending on how you look at it) steadily going downhill each day tiny bits. Now he can barely recognize me or my sister or anyone else. Sometimes he can process information but it takes a full three minutes or so and then he might answer. The last thing was my step mother and her mother were in the room talking about the movie "One Flew Over The Cocoo's Nest" with Jack Nicholson and they were trying to remember the name of the Indian in the movie (Chief) and then moved on to another topic.....about a full three minutes later, my Dad quietly said "Chief"

So he can process a little bit of information. But he is gone more and more each day. Last time he had no idea who I was and could not even say I love you until prompted to do so. Everyday I think today is the today. All funeral arrangements have been made and I am trying to make my peace with the situation. He is currently taking morphine, methadone, atavan (spelling) and another drug at night to help him sleep.....most of these drugs he is getting every 3 hours. We also had to tell other nurses (not his usual hospice nurses) to STOP trying to weigh him because we were sick of him going through being pulled out of bed, put into a wheelchair, on a scale and then back into bed. We understand for drug dosages it's needed but we don't care. He is NOT being weighed anymore and frankly if they give him a smidge too much morphine, lucky him. We also got PO'ed because it still said liquid restriction on his chart, we told the hospice nurses and they promptly changed that....he was only allowed three cups of water per day, but now he is allowed to drink however much water he wants. Which is what WE want for him.

aquasun, you'll find like I did.....at first you feel like you are alone...what do I do? What does society do when someone is sick and/or dying and only has one or no family to take care of them? Who pays if they have no money? How am I supposed to do all this and go to school or work or take care of my own life? My Dad at first (while still living at home) would also drive sometimes, and other times was horribly snippy and snotty and bossing us around. Other times he would make crazy phone calls all upset....and still other times he would just lay on the floor, using the bathroom on himself and not eating or drinking anything for days. He was still using alcohol.

Finally after about 25 hospital visits, "emergencies" and such we got him into full time care and then after a couple months of that, hospice care.

I am sorry you are also suffering with the effects of this disease. It's especially hard to think they caused this themselves with their choices to drink and yet some innocents are out there suffering with this disease who did nothing wrong at all. Sometimes I would get angry and say screw this he did this to himself....but by they end they are so pathetically ill and unable to care for themselves, most of the anger towards the alcoholisim is worn off and you simply do what you can when you can.

I say even when your Dad is bad, in need of care desperatly, make SURE you only do what YOU can do. Make SURE to take "days off" for yourself even if you don't feel like you need them, or that it isn't right, or your Dad needs you more. In the long run of this disease I think one of the only ways for family members or caretakers to survive, is getting "me time" and making sure you utilize it.

I hope your Dad is doing alright and you are getting rest and reading a lot on the net. This forum has been especially helpful to me and I have spent MANY hours reading past posts and past stories.

Thanks for your support everyone. I'll keep updates going.

VIEW IMAGE I READ YOUR ENTRY AND MY MOM IS GOING THROW THE SAME THING YOUR FATHER IS GOING THROW BUT THE DOCTOR GAVE THE FAMILY NOTICE THAT SHE ONLY HAD A WEEK TO LIVE AND SHE HAS BEEN AROUND FOR ONE WEEK AND 2 DAYS. BUT WITH IN THESE 2  DAYS SHE HAS GOT WORSET SHE IS TALKING TO HER SELF MOSTLY IN THE NIGHT AND SHE SLEEPS ALL DAY LONG . SHE LOST HER APPETIT AND SHE CAN'T DRINK ANY THING. SHE HAS GOT SO SKINNY AND SHE HAS BEEN THROWING UP ALL THE TIME . THE END IS NEAR FOR HER BUT I JUST WISH SHE WAS NOT SUFFERING SO MUCH . I HAVE HER AT HOME WITH ME AND MY FAMILY BUT FOR ME BEING 29 YR IT IS VERY HARD TO DEAL WITH SO I UNDERSTAND THE FEAR AND CONFUSION YOU HAVE. I PRAY THAT YOU AND YOUR FAMILY MEMBERS HANG IN THE AND HAVE FAITH . I WILL PRAY FOR YOUR FATHER ....

 

GOD BLESS

 

 

 

 

 

openshut, welcome to the forum.  Unfortunately, you picked up an older post.  Sometimes people can "fall through the cracks" that way and their post not be seen.  Better to start a new topic and introduce yourself and your situation.

At any rate, I'm sorry that your mother has ESLD.  The only vaccinations that are available for hepatitis are for hep A and B.  Hep C has treatment after one is diagnosed, but no vaccine as yet.  There were no tests specifically for hep C prior to 1992.  I do, however, think there were vaccines against B prior to that, though not sure if prior to '90 or not.

I suggest you read through some of the older posts.  You will find answers to your questions, I'm sure.

Is your mom under the care of a hepatologist?  Is she taking diuretics for the fluid?   Liver disease is different in everyone, so no one can really predict how long your mom will live without treatment.  The disease can be managed, to some extent, through proper diet--particularly no red meat and lots of fresh fruits and vegetables--and of course, no alcohol.

I'm sure you will receive lots of support here, as well as information.