Re: hepatic encephalopathy increasing - what to do?

[Guest guest]

Carolyn, thank you for sharing your experiences with HE.

Neither our PSC specialist or transplant coordinator suggested medication when we brought the issue of HE escalation forward last month. Over the past few weeks the HE has been spiking. We entertained friends during the Super Bowl game; he seemed okay (he had napped in the afternoon). During the night he was unresponsive to my voice (1st time occurrence). When he finally awoke he could not recall the game, not even his name. The high level of confusion lowered the next day, to a level more normal for him.

He uses lactulose 2x daily; and more when confusion begins to escalate, if we're lucky to catch that stage. He becomes unresponsive to direction at the higher levels of HE.

I will follow your advice and let you know what happens. Thanks again, Deborah.

> 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>