How severe can it get?

[kwill531]

My husband has cirrohsis.  He is having complications within his whole body.  He has encephalopathy.   His ammonia levels stay at 160.  That creates confusion and talking out of his head at times.  He hasn't been able to drive in over 6 months because of the accidents he was having , and getting lost.

I guess the worst compliacation he is having at this point is the flapping in his hands.  I have to feed him at times.  He recently started falling all over his own feet.  He has fallen a total of around twenty times in the past month.  He was hospitalized once in that time, not to find anything different.  The neurologist there said it was ataxia.  He had another visit with yet another neurologist and he called it apraxia. I understand that to mean his body won't do what his brain is telling him.  He was sent last week to another neurologist and he is trying him on a medication for Parkinson's Disease.  It has on;y made him sleep even more.  He kkeps falling, called an ambulance last week because he went through a glass table.  Yesterday fell again , after only two steps to his wheelchair.
He is fighting the use of the wheelchair, and tries to do for himself, but it isn't safe for either one of us to have to keep going through the falls.  I am having alot of pain in my back from ahving to keep picking him up.
So, How bad can it get?  Is my husband dying?  I did want to mention that we are supposed to go this month for transplant evaluation.  They say his meld score isn't high enough for him to actualllu get on the list at this time and that the encephalopathy doesn't weigh in in that evaluation.
Any straight forward information you have would be greatly appreciated.

Kwill

[kwill531]

Thank you for your answer.  It was basically what everyone has told me.  I have read alot
and asked alot of questions, but I'm still not at a full understanding.

Can this encephalopathy kill him before his liver gets bad enough for a transplant, or how bad does the encephalopathy get before that would qualify him for a transplant?

He is having problems with higher blood pressure and lower oxygen.  Nothing reallly low, just enough for the doctor to tell me to let him rest and calll if he gets worse.

Are there any places that offer help?  Does he need hospice?  He is a very large man and getting weaker al the time.  I am not sure that I can even get him to his appintments next week.  Just asking more questions.  I am so in the dark with this disease.  In the dark regarding the progression and how much help I need.

In the past several years I have taken care of three family members of my own with cancer.  This disease has taken me by surprise and I am not sure if I can physically take of him if he gets much weaker, so what are my options at this point?

Thank you for taking the time to answer my questions, as you can tell I am a bit overwhelmed.
Kwill

[kwill531]

I just wanted to add , that he is currently taking lactulose and xifaxin, but I can't always get him to cooperate with the lactulose.  He sleeps about 17 hours a day.  I try to wake him, but it doesn't always work and even when I do, he won't always cooperate.
Kwill

[Thomas D Schiano, MD]

hepatic encephalopathy can mimic many neurologic conditions, including a stroke and parkinsonism.  What you describe can all be related to hepatic encephalopathy.  I presume that he is taking some of the medications that are in the armamentarium, such as lactulose, neomycin and xifaxan.  I don't think he is dying but he needs aggressive medical treatment.  A transplant is sometimes necessary if medical treatment is ineffective. Unfortunately refractory encephalopathy does not figure into the MELD score calculation.