Hepatic Encephalopathy

Hello, everyone. I am new to this forum. I am 56 yrs old, diagnosed with chronic hep c in 1993, and was going along just great until recently. I took the the combo treatment back in '99 and when that stopped my numbers came back up. Just recently found out that I am Type 2, and that the treatment should have worked. But it didn't. I have esophageal varices, which decided to start bleeding one Sunday morning in October of last year. Was throwing up blood like I had all kinds to get rid of. Went to hospital via ambulance. They put a band in and gave me plasma. My platelets dropped from 65 to 30, took a while to get those back up (am now taking vitamin k for clotting). Since then, in November I was hospitalized again for hepatic encephalopathy. My ammonia level was over 100. My daughter, who I live with, found me on the floor of my bedroom (apparently in a mess). Ambulance came, took me to hospital. Then in January of this year, went back into hospital for hepatice encephalopathy again. Only this time my ammonia level was 395! I was put on ventilator, given lactulose like crazy, and of course, I knew nothing about it. I was 'disconnected' (as my sister says). I didn't know I was in the hospital for over a day. When I came to, it was like, oh well. Here I am again.

But I can now tell when I think I need to get my ammonia levels checked....speaking incorrectly, losing balance somewhat, blurred vision.
So, last week, went to dr for something else and asked that they do an ammonia test. Don't know the results of that yet, but should this week.

Anyway, the dr said that what sent me to the hospital this last time was a UTI. That also caused my ammonia levels to rise. What a mess hep c does to the body, but GOD has seen my this far and he'll see me further.

Thank you for letting me say this.

Yes, I am on lactulose. That got to where it wasn't doing the trick by itself, so they also put me on xifaxan. I'm takin lactulose 30ml 2x daily and the xifaxan 200mg 2x 3 daily. I can't hardly go anywhere that involves driving for a while. haha

hello. any comments on when to go to the hospital when i think my hepatic encephalopathy has returned

Hi, Coachtony, and welcome to the forum. Could you please start a new thread (click on New Topic instead of Reply), give it a subject and introduce yourself and your situation to others? This way you will get many more responses. As AJDilly mentioned, you should be taking Lactulose if HE is a problem.

Hugs,
Connie

Hi Jedajo

Welcome to the forum.

I see you are caregiver to a Hep C patient who is pretty far along in his disease.

The Heptatic Encephalopathy can be awful.  I know, as my partner, Mike, was loonie for months before we got the right medications organized.  It took 4 hospitalizations before we got the combo of Lactulose and Xifaxan in him. And he was CURED the morning after transplant...mental status returned to normal.  Of course he has amnesia about the year before!

Until the meds, he was sleeping all the time and a bear to be around when he WAS awake. Nasty and oppositional much of the time. And a true loon.  He couldn't remember from one moment to the next what he had wanted or decided and I was pretty much the whipping post for a while there.  I think I cried a river, personally ended the drought in Florida with my tears.

You have posted on the right forum for patients and caregivers of folks with advanced liver disease, but you'll get more response if you start a NEW TOPIC and explain his situation to us.

When he got Hep C, his diabetes situation, whether he has tried a treatment.  Whether he is seeing a hepatologist at a major medical institution.  Whether he is drinking alcohol...which will mess him up more and will make him ineligble for transplant (Hep C is one of the number #1 reasons for transplantation in the US).  Those with alcoholic liver disease, with our without Hep C have to be 6 months alcohol free to be considered for transplant.

This is going to be a rocky ride...either to surgery or death.  Your hubby has a really bad disease.

There is some educational material and links at the top of this forum, take a look.

And come back, tell us how he is doing. And you can post how YOU feel on the Caregivers' Thread...when you just are at your last nerve...post a rant...we can take it!  Most of us have been there....

Best,

Mama Lama

Post Edited (MamaLama) : 5/13/2012 5:21:50 PM (GMT-6)