Hepatic Encephalopathy

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siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/2/2010 9:43 AM (GMT -7)   
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.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/2/2010 11:29 AM (GMT -7)   
Are you presently taking lactulose, and if not, why not. They also gave me lactulose and xifaxin to help rid me of excess ammonia.

siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/2/2010 12:24 PM (GMT -7)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2010 12:43 PM (GMT -7)   

Siloamsandy, thanks for starting a new topic as I suggested.  And again, welcome.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


coachtony
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/1/2012 9:29 PM (GMT -7)   
hello. any comments on when to go to the hospital when i think my hepatic encephalopathy has returned

AJDilly
New Member


Date Joined Jan 2012
Total Posts : 5
   Posted 2/1/2012 10:43 PM (GMT -7)   
CoachTony, based on my experiences with my Dad and his HE (which he has been hospitalized for this past weekend, and the one before it and a few times in the months passed...) if you can tell that you are beginning to act strange, i would let someone know and have them drive you to the hospital instead of having to be forced to go by ambulance when you would be near impossible to handle for your wife or caregiver. It would make things easier, and get you fixed sooner. I've noticed my dad turn from almost normal, to completely disconnected over night. Hepatic Encephalopathy is nothing to take lightly!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/1/2012 11:05 PM (GMT -7)   
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
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

jedajo
Regular Member


Date Joined May 2012
Total Posts : 21
   Posted 5/13/2012 1:37 PM (GMT -7)   
My husband has Hep C, and recently he went into a coma, the only way he would go to the hospital, and was diagnosed as hepatic encephalothy.  He was in ICU for 5 days, and then sent home, because he threw such a fit, and kept pulling his IV out. They didn't want to deal with him, but they did tell him he needed to stay longer. He did ok the first couple days, but now he's back to his symptoms again. Forgetful, loss of memory, sleepy all the time, and making messes every where he goes.  I have no idea what to feed him, since he's also diabetic, and he acused me of trying to kill him, when I bought him crangrape juice.  He said it had to much sugar. He's so tempermental.  What do I do? Help!!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4716
   Posted 5/13/2012 3:59 PM (GMT -7)   
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)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/13/2012 4:34 PM (GMT -7)   
Hi, Jedajo. I just wanted to welcome you to the forum. I also suggest you start a new thread by clicking on New Topic instead of Reply. I can't add much to what ML/Carol has said except that the educational thread she mentioned is in a folder at the top of the page entitled Hepatitis Resources. There is some excellent information in there. You can also learn a lot just by reading old posts.

It seems to me that your husband is not getting enough Lactulose. You can increase the dosage without having to okay it with the doctor.

You are in a difficult situation, so remember to take care of yourself. Caregivers can get burned out very quickly.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
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