Other's Experiences w/ Encephalopathy

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New Member

Date Joined Aug 2010
Total Posts : 4
   Posted 8/23/2010 8:15 AM (GMT -7)   
Trying to be as short as possible...

My aunt's three states away and is in end-stage liver disease. She's an alcoholic and refused to admit it. Pressure from family didn't change anything. So here's the breakdown:

On top of the alcoholism, her liver's taken a beating from a genetic condition known as Hemochromatosis (organs store rather than use iron). So now things are coming to a head. I drove down this weekend to see her and got a full dose of just how advanced her liver disease is. To me, there is no sugarcoating anything, she's dying.

She's fully delusional to the point she told me I'm her daughter and she's terrified for my safety because there is a rapist with both male and female organs who raped her and is now after me. She talked about a hidden camera in the wall where the "Blue Meanies" are watching her every move and asked me to sit with my back to the wall so that the camera can't see my face and pick up what I'm saying. She also talked about how the hospital staff is putting tequila in her IV to poison her and they aren't letting her have any food.

Honestly, at times it is hard to pick out what is real from her delusions. Friday she was bad but she had pinkness to her cheeks and wasn't horribly jaundiced. Saturday, she was mustard yellow and seemed less delusional at first and then quickly progressed into her delusions again. Yesterday, the doctors and nurses couldn't get her to wake up for her breakfast or medications. Seemed to me that her left eye was drooping, so I'm thinking a mild stroke. Her doctor said he was ordering a CT scan to check for that or a brain bleed.

Because I'm only a niece, I'm not getting told much unless my uncle is in the room. My uncle tells me what he can, but he's nearing 80 and so stressed out that it's hard for him to remember everything he's told. In his case, if he's in the room alone with my aunt, she screams at him that it's all his fault for her being so sick.

I know she's on lactulose. I also found, at their home, prescription bottles for -


I'm not sure how many of these she's really still on now that she's in the hospital. I did sneak a peek at her medical chart when the nurse was taking vitals. Her BP has been in the 90s over 40s, pulse in the 70s, temperature's been normal. Respiration was at 12 yesterday. Couldn't see oxygen or ammonia stats. I know the doctor said he's afraid the encephalopathy is progressing from stage 3 and that he doesn't expect she'll survive long enough to get a new liver.

As of Saturday, she was talking about not being able to hear as well. I remember someone else saying that happened with their relative. But right now, I'm having to be the strong one because everyone else is in complete denial saying she'll bounce back. I honestly don't see that happening. She has family overseas who are waiting to hear if they should come say goodbye now. I'm thinking it's time, but need to hear other's experiences with hepatic enceph.

Veteran Member

Date Joined Apr 2009
Total Posts : 1154
   Posted 8/23/2010 9:54 AM (GMT -7)   
even if she does bounce back she cannot survive long if she is drinking. if she is that bad off i say it is bout time for everyone to come say their goodbyes or it could be too late. my mom was so confused when she was awake she thought her parents were alive even though its been five years. i had to keep telling  her and watching  her cry over and over. it did break my heart but now she is in a better place and not suffering
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 8/23/2010 2:54 PM (GMT -7)   
I agree with WG. It sounds like she is in very bad shape. If family wants to come say goodbye, they'd better do it now. She could lapse into a coma at any time.

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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