Hepatatic Encephalopathy Documentary

This link was placed here by one of our caregivers (themizz) and shows people struggling with Encephalopathy and the toll it takes on their families. Thanks Miz.


www.hesback.com

Post Edited By Moderator (MamaLama) : 1/6/2014 10:17:04 AM (GMT-7)

Having just watched the video, I'd liked to have heard more about the people and how, or why they have HE. I believe one mention was made of alcohol use, but what about the others? Why was there no mention of lactulose or xifaxin, especially when the sponsor of the video makes xifaxin? There's more to HE, than these intense episodes that were shown. Another question; why is that man from Oklahoma out shooting a pellet gun with his son, or Lynette driving? Irresponsible in both instances, both for the son being around when dad has a gun (even a pellet gun), and Lynette endangering other drivers. I guess they're trying to make a point.

Watching this made me realize how lucky I was, having doctors that knew how to treat me, and that I was aware enough to take my meds when I felt stupid (which was daily). Somehow I was able to concentrate and do what I had to, to function, however minimally. I knew to stay home when I needed to and drink lactulose continually. Xifaxin was what saved me. I was taking another antibiotic initially, that helped a little, but xifaxin made a huge difference. My docs and nurses kept checking my ammonia level and I was seeing them at least once a week. I was very lucky for that help and of course, a transplant..

Ziff,
I had a similar incident while driving one day. All of a sudden I didn't know where I was. Pulled over, drank some lactulose and then fell asleep. Woke up about an hour later and was fuzzy, but knew where I was, turned around and very slowly drove home. It scared me. A lot. After that, more lactulose and less driving.

As for living on an island, at that point, it was a couple of miles to get to anything, other than other houses. Most of the island is somewhat rural, other than town and surrounding areas. Now that I live in town, it doesn't matter, though, having had a transplant, no more HE, just normal senility for a 63 year old.

Would be nice if someone would post how to put a hyperlink directly into our posts here... it was done for Connie's thread...

Sandia

For me, I knew I was "off". From mine and Davids conversations he knew also. It's the ability to know if your capable of certain task. Me being mid forty and driving since I can remember is like second nature, A repetitive function, if you will. The driving aspect wasn't the problem for me. It was mentally negotiating where I was going. As long as it's a place I knew without thinking of how to get there I was fine. Again, If I lived back in South Florida at the time I don't know that I could have pulled it off. Living here in the boondocks now affords me less traffic and permanent landmarks. Been living in this area for 8 years and still dont know the name of the main road to get to my neighborhood.

Just me guessing here but I'd say that having experience with drugs and alcohol may have helped me to define when I was just to messed up to go anywhere. Honestly it's alot like taking hallucinogens at times. For those that don't have that experience it's incomprehensible to wrap your mind around how you can be functional and still tripping. Big difference is you know you'll come down from the drugs in X amount of time and you know it's gonna start soon after you ingest it. HE has no definitive start and end point.

Over the years when engaging other people who suffer the disease I've tried to make it a point that they must stimulate there brains as much as possible. I'm a hands on person like David we both worked in skilled trades. He continued to fight to keep working even if he felt like crap. Me, I immersed myself in home projects that made me think, These projects took me triple the time they normally would but they made me think. Not only that but the feeling of accomplishment gave me incentive to push harder. I'm not the smartest guy or the degree toting type but I have a knack for tinkering and mechanical things. I firmly believe my condition today is reflective of my daily chores and sitting in the shop for hours playing with projects. I come inside and take a nap every few hours and start again. You have to work at fighting HE. Most men folk need that feeling of self worth derived from doing these things. You sit and you'll die is how i feel.

Is everything hunky dory today with HE. No, although it's far better than it was. Surely most have noticed the time it takes me to post and usually it comes out good but I still have problems putting thoughts together and find it hard not to get frustrated. Forgetting things in mid sentence and jumbling up conversations. Believe me I had some whoppers back in the early days of posting here.


Ziff

HE was difficult at our house.

The driving was an issue for a while before the doc helped me....telling Mike no driving until after TP and that he was sending a letter to the Dept of Motor Vehicles so that if he were to be in an accident, his auto insurance would not payout! (I don't think he did that, but it was clear...not driving with HE.) What he had been doing was driving very aggressively...cutting people off that annoyed him, speeding up at yellow lights, to the point I would not ride with him any more. His lease was up about a month after the NO DRIVING conversation and we turned in the vehicle. We have continued to have only one car. He does a lot of driving now, but he knows that if he were to start to have HE again, I would have to take over all the driving. I drive now when he is tired or upset.

Mike has never articulated to me what it felt like for him to have HE. He watched the movie and when I get home I will try to have a chat about it. So I only know my observations. I had more of deceivedwife's experience. Mike became a grumpy person, mean, negative, nasty, and often paranoid. I think I cried once a day. My sis lives locally and her house was my retreat. She would listen and I would calm down and then return for the next round of the crazies.

He had periods where he wanted everything to be secret and said if I told anyone anything he would kick me out of his appointments and not tell me anything any more. Then he would tell folks everything himself. Maybe he wanted to control that access to his information. My observation is that he shifts from one mode to another and it is difficult to keep up with his switches. I have always done the paperwork and estate stuff, so he didn't know what to do to mess things up. Thank goodness.

When he was having a really difficult time he was down right mean. Connie used to tell me it was HE for sure, but that I should set limits if he was being abusive. I tried but that did not work.

It was the Xifaxan that saved ME from HE. (And some counseling.) Mike was in the hospital one of the many times and they started him on Xifaxan and within one day his affect changed to his nice side. It was that week that one of the Hep docs started his evaluation even though it had not been 6 months sober. Mike looked so awful and had lost a ton of weight. He wasn't cured on the Xifaxan, but was much more mellow.

He would scream at me constantly. Lost things then fret for hours looking for whatever it was...his keys, his wallet, his comb. Most assuredly I had set up a little scavenger hunt for him, hiding his stuff around the house and car so that I would drive him crazy. What??? It was so sad.

He had the dropsies...juice, shampoo, everything...fell right out of his hands. Also my fault. And a mess.

He started being unable to make or execute a plan, read a book, follow a TV drama or film with a complicated plot. He liked the sit coms...especially half hour reruns...Seinfeld, Two and a Half Man...shallow story, humorous one liners.

While this was going on his hearing took a dive...or he became less able to cover it up. Turns out that he is now profoundly hearing impaired and he gets grumpy even now about that. Basically, he would prefer that I remain silent until, I am quite close, better on the right side than left or front, that I am sure I have his attention and then tell him whatever I have to say in the fewest words possible. I "blather", as you all know from my long posts. This continues to upset him HE or no HE.

After TP the HE was totally gone and he has amnesia about long period of time. He simply says I am making this stuff up.

I live with the fear that ESLD will come again post TP at some point and that the HE will come back.

He was like this during the treatment in 2003. And is one of my fears about the new treatment, to be frank. I am sure you have "heard" the hint of my fear in my posts along the way.

Mike has won the jackpot in getting a place on the Gilead post transplant trial and I should be skipping and hopping every day...but....we'll see.

Hugs,

Carol

Mama, your link is broken ;)

And I wanted to add something about Mike's Gilead trial and Riba Rage. That is what that is called during treatment ;) In Mike's trial, being post transplant, they may not use anti-depressant meds. My husband tried to go without the anti-depressant the 2nd treatment. It was horrible! Of course he started when he became a raging fool. It was nothing like HE. Riba Rage is more of....anger, mean, but still capable to drive, walk, make sense, remember, no hallucinations, etc. Other than the anger and mean stuff with HE, Riba Rage was really diff' than HE, for my husband.

For some doctor's, and anti-depressant is started pre-treatment. I know it helped themister tolerate treatment to the end at the full dosage.

Hang in there. Big hugs, themiz

Post Edited (themiz) : 1/6/2014 10:58:31 AM (GMT-7)

I did drive, though most of the time I was able to distinguish if things were off. Then I'd drink more lactulose and wait until the fuzziness wore off. I live in a place where there are only 2 lane roads, no stop lights and the speed limit is 20-30 everywhere, except a state road, where it's 45. I avoided the state road. I erred on the side of caution, but had to work, or I would have starved, much less pay for my meds. My HE wasn't as bad as what I've seen from others and I was very careful about not pushing things. There were many times when I didn't leave the house because I knew I couldn't cut it. My domestic partner of 16 years left me, so there wasn't a choice about working and having to drive. I did what had to be done. It was an incredible struggle, but it was worth it. I got through it, had a transplant and today, no more HE and I'm back to normal, or what passes for it.

How did I get through it; I lied to my docs. Even had an old girlfriend come in to convince them one time.

Don't ask him how big the fish are he catches.

Ziff