Posted 5/31/2012 1:11 PM (GMT 0)
Good morning UnT,
We have been through the whole process at our house.
ESLD is End Stage Liver Disease. It means the liver has decompensated or is well on the way to decompensating...ie NOT WORKING. The HE is a sign of that. Stage 4 is considered End Stage and the patients get very sleepy (somulent) and can go into a coma and die. There is no regenration of the liver once it is decompensated. Sometimes just a little bit still works and that is what carries the patients through to transplant. But there is no coming back from End Stage without transplant. Nothing like dialysis, no artificial heart that can help those patients during the wait time.
The HE is as you observe, a decreased ability to attend to things well and a loss of function. My partner, Mike, could once do anything also, but by the time he had his transplant, he could hardly find the toilet, and didn't sometimes!
The TV remote was more than he could manage and he went through 3 cell phones because they were 'horrible.' But truth was that they were too difficult for him to manage. We got a call button he wore arouind his neck that called my cell without him having to dial. If I didn't answer, it called 911!
He set the house alarm off one day by mistake and couldn't remember our "safe word" so they police came and that was a mess. He was so upset. Finally THEY called my call number and it got straightened out. Poor Mike was a mess. He cried.
The main thing for us was to know when he had to stop driving. I noticed an in general increase in his agitation and aggressiveness. He started up with that in the car. Someone tried to pass him on a narrow road one day and he pulled to the middoe to "teach the guy a lesson." Good grief, we could both have been killed. The doc put a stop to the driving until 6 weeks post transplant. He said with the notation of non driving in the medical record, that if Mike drove and had an accident, the insurance wouldn't cover.
Before Mike got sick he was a computer consultant. He worked at a large insurance company and helped folks with technical problems with their PCs. He was good at it. Just before we realized he was in trouble I asked him to make a set of lables for my 2010 files...you know...January, February, March... There is an Avery template you can use and it takes 5 minutes! Nope. He could not figure that out. The man used to interface with VPs every day about PC stuff! GASP. He was gone.
Yes, you ARE alone. But I've posted on this before. the day after transplant, Mike was back to normal. He wanted to watch the news. A couple of days later (May 5th) I caught him wishing the staff in the ICU greetings in Spanish!
He hadn't been able to follow a tv story for a couple of years. And episode of CSI threw him as he couldn't follow the plot. And this is an educated man who reads 3 books a week! I had to make every decision, do all the chores, all the lifting, all the fixing (or had to find help). He still cannot do what he did before as his physical recovery has been slow and he has a giant incisional hernia and can't lift.
I have also posted about amnesia. The year before transplant and the transplant time itself is a blur to Mike. He can not remember most of what happened. Unfortunately, the caregivers know exactly!
Those patients with strong support seem to do very well with the program.
It sounds like your man is in good hands.
Best,
Carol aka Mama Lama