Re: hepatic encephalopathy increasing

February 8, 2009

>

> Hello. I'm concerned about my husband who is in end-stage PSC with a

> portal liver stent and relatively low liver stats . His encephalopathy

> is usually at grade 2 level but several times over the last 3 weeks he

> has drifted into grade 3 for a day or so. This increase in frequency

> scares me a little. He has little to no recollection of these events.

> The doctors advise me to watch over him during these times. Can someone

> with this experience speak to how to best handle this stage and what to

> look out for?

==============================

Hi Deborah,

Hepatic Encephalopathy (HE) can be a really frustrating thing to deal

with. I generally wobble along between grades 1 and 2. You don't

mention whether your husband is on medication for the HE .... surely

he is?? When I first developed HE, they put me on Kristalose, which

helped a bit but not nearly so much as we needed it to! Besides

which, it tends to keep you hovering pretty close to the bathroom!

They then switched me to Xifaxan (rifaximin) which has been a real

godsend. I started at one tablet per day (a couple of years ago) and

now am up to 3 tablets per day. My dr. has increased dosage very

slowly to correspond with increases in worsening symptoms. If your

husband has not tried Xifaxan, I strongly urge you to get his drs. to

prescribe it. One word of warning -- you may have to do battle with

your insurance company since this is a very expensive drug.

When my HE is acting up, I don't dare go near the stove as things like

hot burners and pans don't seem to register in my mind. Also, things

don't stick in my mind for more than a minute. It can be very

frustrating and upsetting, as I'm sure you already know. Basically,

you need to watch him like a hawk to ensure his own safety. DO NOT

LET HIM DRIVE!!!! (I quit driving several years ago, when I realized

I couldn't figure out how to react to a car coming right at me.)

I was hoping Barb in Texas would reply to you since her son Kenny has

really been through some tough stuff with HE (including coma) at the

time of, and between his transplants.

Hang in there!

Regards,

Carolyn B. in SC

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