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03/17/2011 12:36 PM

Chronic Encephalopathy

cbjones
Posts: 1
New Member

About how long does hepatic encephalopathy (from alcoholic cirrhosis) take to progress from Stage 2 to Stage 3/4? Brother in law has had Stage 2 about three years now but lately he seems to be getting worse. He stopped drinking 3 years ago at age 51 when he experienced severe vericeal bleeding and 8 day coma - at that time doctor told him he had 3 years. He does take all his meds. Thanks for any help. Just trying to find some real answers.
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03/17/2011 01:07 PM
dublincolleen
 
Posts: 170
Member

im not sure weather this is any help to you but Ken used to move from mild to severe and then back. regular lactulose made a huge difference in maintaining stability. when he had any type of infection , even flu it increased the HE. make sure his doctor is informed about any changes you notice.

im sure others will reply soon with a lot more information than i can offer.Colleen


03/17/2011 04:46 PM
mikealpha1
mikealpha1  
Posts: 2286
Group Leader

Been there, done that. The only stage I didn't exhibit in the last 1-2 years would be stage 1. It's not so much how long until you reach stage 3 or 4, to me those were like falling off a cliff that you didn't see coming. Primarily if you keep up your lactulose and xifaxin/rifaximin if prescribed you can go a long time without experiencing those stages. However, it came to a point for me that my thyroid gave out, and my liver must have said, "that's it I don't know how you expect me to do anything without proper support, I quit." I went into a coma, stage 4, came out of it, back into it and finally received my transplant 10 days after entering the coma. Before that I had experienced at least two episodes of stage 3 where I could respond to people, but I lost those days.

The key to managing this is a log. He needs to record on a daily basis his weight, what time he takes his lactulose and a tick mark for each bowel movement. That along with my 7 day pill minder enabled my wife to see when I wasn't doing what I was supposed to (not that I didn't mean to) and take action.

3 years, well I guess he was wrong about that, huh? There is no way anyone can put any sort of timetable like that on us cirrhosis sufferers, as soon as they do, we will do what ever it takes to prove them wrong. So fight, the life after transplant is worth it, get a good hepatologist at a transplant center, get on the list, do what the doc says, and in the words of Spock "live long and prosper"


03/17/2011 06:13 PM
bjlvls
bjlvls  
Posts: 1013
Senior Member

Hi cb, I'm glad you've joined us here. If Mikes answer didn't address your question my answer will probably not be the one you're looking for either. It's next to impossible to tell from the information you've provided to even hazard a guess as to how long your brother in law has left to live. Because he has stopped drinking, his chances of survival have likely increased dramatically from the time he was diagnosed. Many of us here were given that speech, the “you have only ‘X-Number' of years left” decree. I'm happy to report that way more than a few of us are still alive and kicking long after the dreaded proclamation!

Let me first say that staging is just a tool. It's based on pathology for the most part (what can be seen through a microscope as with a biopsy). It doesn't always mean that a life span can accurately be determined. Much depends on the symptoms he's experiencing, the complications he's exhibiting, and his lab values.

You've mentioned his HE is getting worse and that he takes his meds. Do you know what meds he takes? Which of these categories does his encephalopathy fall into, from the perspective of those who are around him most?

1.Trivial lack of awareness, mild confusion

2.Disorientation or intermittent disorientation, usually involving time; inappropriate behavior, slurred speech, obvious personality changes, obvious “liver flap” (asterixis or shaky hands)

3.Quiet but can be aroused, unable to perform mental tasks (like adding and subtracting), amnesia and marked confusion, fits of rage, speech is present but unintelligible

4.Coma, with or without response to pain stimulus

We could also be a little more help if we knew the answers to these questions:

Does he have ascites (accumulation of belly fluid), muscle wasting (cachexia), varices ((Enlarged and/or bleeding veins in his esophagus, stomach or rectum?)

Do you know any of his lab values? The important ones for this exercise would be serum Albumin, INR (clotting factor), total Bilirubin, and serum Creatinine. Knowing his platelet count would be helpful too.

Do you know if he's considered being evaluated for a liver transplant?

Cirrhosis is always a serious condition. It is not always a direct route to the grave, and many people live relatively normal lives for a long time with it.

I'm sorry I didn't have many hard pat answers for you, but the “real” answer is just that there aren't any. You'll find that is a common denominator in all of us who suffer.

We want to be here for you and your family during this stressful time, and please don't hesitate to call on us if we can help.

I'm keeping you all in my prayers, Bobbi

I forgot to mention Gail, our senior group leader's web site. Please refer to that for some very good, well-written and easy to understand information about cirrhosis. She has a section on staging that you'll find interesting. You can access that site at:

http://www.livingwithcirrhosis.weebly.com

Ok, Now I'll go Smile B

Post edited by: bjlvls, at: 03/17/2011 07:31 PM


03/23/2011 02:03 PM
mpmom
mpmom  
Posts: 3275
VIP Member
I'm an Advocate

cb,

The others gave you good advice. I can tell you that during a recent bout with the flu and strep encephalopathy was a big problem.

I just wanted to pop in and say welcome


03/23/2011 02:20 PM
Capedrifter
Posts: 323
Member

My wife has been through multiple bleeds, SBP, and has suffered most of the consequences of an ill liver. But, her HE has been episodic and mild when evident. So, what I'm trying to toss into the information pool is that the extent and severity of issues like HE are impossible to predict and vary greatly from person to person.
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