Encephalopathy

DeeDee, sorry to hear this.  The Lactulose should help with the "losing your mind."  Try to find alternate transportation.  Most medium-to-large cities have door to door transportation for those who have medical problems or disabilities.  I take this service myself (I've never driven and can't walk the distance to the bus stop.)  In this way, I don't have to depend on others to take me wherever I need to go.

If you can't get this, hopefully you know of someone who can provide transportation.  And if the Lactulose works, you might be able to drive again.

Hugs,

Connie

DeeDee, I can relate to the tired part, but I've never had encephalopathy (knock wood.)  You should notice some improvement right away with the Lactulose, if taken as directed.

Hugs,

Connie

Hi deedee,

       Like Connie I have never experienced any bouts of encephalopathy, yet!!! Me and my girl used to have 2 cars until I sold mine because of high mileage and mechanical problems in April of 2010. What you are talking about and experiencing now is the reason I have not bought another one. Once in awhile I drive my girls car but I'm aware to expect the unexpected, meaning in forms of new symptoms or reoccurring symptoms. Plus my doctor says he cannot give me the cocktail ( interfueron and ribavarin) because I am not well enough. So, I wait and the Hep C virus is still there. It is not going away.I have no clue the length of time I have had ESLD. The symptoms started in July 2009. How long have you been experiencing symptoms of ESLD before you got to the stage of encephalopathy? My health is much better than last year at this time but I asked my hepatologist who I see every 6 months,now, " what if I can't ever get well enough to take the cocktail?" He said there is always the transplant route. Just keep positive and do what your doc tells you and take the meds. Its good to hear you venting about it. Your entitled to your own feelings. Hope the extra lactulose does the trick. BostonMike.

I was diagnosed with ESLD in 2008. My Dr. said ammonia levels dont always tell the real story and that its just a marker of sorts and that someone with mod. high and extremly high levels can be just as confused its I guess an individual thing. It started when the lactulose stopped working. I didnt know to increase it. Now I do and to increase it as much as needed. I seem to have to take quite a bit along with miralax if needed. I have found that when we have a fam. get together I cant keep up with conversation, I just sit and smile. I also found I need 12 hrs of sleep and at times even more. I still havent been able to take care of my bills, maybe I'm just afraid I will screw it up and realize I cant do this anymore. I have always been the finance wiz in the house so not sure what will happen with that. I have always been the strong one and logical one and now I'm scared to think I am losing my mind, I can handle anything else but this seems to have broken me. I cant take the cocktail and transplant is my only option at this time unless they find a new med. I did try it (1/2 the reg. dose) but my labs plummeted and had to stop due to it being to dangerous for me.

Connie, Susie, Deb, Mike and David, thank you for listening and for your experience and advice.

My thoghts and prayers for all of us,

Dee Dee

DeeDee, It seems like what you are talking about is the same as my hubby has been experiencing. He just can't keep it together for detailed stuff anymore. I do the bills, thank goodness, because he couldn't do it. The other day he told me he was going to throw his cell phone out the window of the car because the gosh darn thing was a piece of..... Well, he couldn't remember how to retried his email or do a google search. He KNEW how, but it escaped him. This is part of the deal.

He has good days and bad days. He takes the lactulose and xifaxan and it has really been helping. But it has brought him back from being MR. Unreasonable Angry Man AND confused to just Mr. Confused.

The other day he told me that he thought we should get a camera for the PC so that when he is in the hospital, he could use Skype to talk to his grandkids (if he wasn't too scarey looking). Well, he bought me that camera for Christmas but it sits uninstalled next to my laptop on my desk.

He couldn't believe that he totally forgot. Totally.

So, you are NORMAL.

He has Hep C since 1970. Failed treatment 2003. Cirrhosis since then. But continued drinking alcohol until Sept 2010. ESLD diagnosed Sept 2010 with fully decompensated liver and MELD of 24.

Now is MELD is 19 and he is feeling a lot better. Sleeping 10-12 hours at night. Naps both morning and mid afternoon, at least an hour, sometimes more.

He says, in a good moment, that he is tired of being sick, but he doesn't want to die yet, so he waits and waits and waits. At least he is in no pain and isn't peeing brown! He still is pretty yellow.

Carol

Connie,

 I tried the inter. and riba. treatment but couldnt tolerate it so the new treatment isnt an option for me either.

As for your spelling it happens to me also, I also have a problem saying the right word out loud and I at times cant pronounce words and I cant think of the word I want to say, it's like I have a total mental block or as I like to say brain fart LOL!!

I just pray this gets better for all of us.

Hi Rick and thanks as always:)

Carol,  Ive been thinking of maybe writing a journal   to give to my kids and grandkids when and if I cant communicate intelligently..hopefully I can accomplish it. Thanks for your response.

My thoughts and prayers are with you all,

Dee Dee

I TALKED TO HIS DOCTOR WHO TALKED TO HIM AND TOLD HIM NOT TO DRIVE ANYMORE, UNTIL OR UNLESS THE HE RESOLVED.

His MELD was 24 at the time. He was acting crazy, screaming at me while I was driving, screaming at other drivers, mad at the world. I wouldn't drive WITH him any more.

So when the doc said NOT MORE. He stopped.

After 6 months of sobriety, much better MELD (it was 18 in February), he has been feeling well enough and not acting crazy, so we have begun to let him drive to the corner to the gas station, or to the post office 2.5 miles away. But no highway, no night time, no long distance with multiple stops (like shopping). Even he realizes now, that he is just too worn out to drive.

His Ammonia level is climbing again per blood on Tuesday, so we are going to cut out the gas station and post office for a while and hope that comes down some. Creeping up scares me. they increased his lactulose.

It is possible that he has not been complying fully with the dose, it isn't like it is a pill that gets left in the pill box when he doesn't take it, it is in a jug...they all seem to hate taking the stuff.

Good luck with all this,

Carol