Cirrhosis Support Group

Hi all. I'm sure most of you don't recognize me, since I am normally too busy to do more than read a few posts now and then. My husband has Cirrhosis from fatty liver, and I am his only caregiver. I also take care of my two young children.

The past few days have been extremely difficult. It's when I allow myself to get hopeful that things seem to unravel the worst with him. We started on a new medication that was supposed to help with the HE...and for the first three days or so I actually felt like I had my husband back. He was joking like he used to before he got sick, alert, and awake. Then, a couple days ago, he was right back to bed all day and confusion. Yesterday was the worst confusion he's ever had. It was like he was daydreaming all day.

My question for the caregivers (and anyone who would know) is this...when your loved one is experiencing HE continuously even though they're already glued to the toilet from Lactulose, do you just continue to ply them with more Lactulose? It seems that the doctors always have the same answer when I ask about this type of thing, "Give him more Lactulose."

Also, is there any one food that really seems to bring on the HE for you or your loved one? We already avoid any meats other than chicken and turkey, but he's been snacking on a lot of salt-free peanuts and walnuts lately. I'm wondering if those could somehow be bad for him?

Any and all ideas are welcome.

Hey RandomLady!

I can't really address your diet questions--red meat protein seems to be one of the biggest contributors (depending on who you talk to). HE is not something that can be "turned off" by medications. The lactulose, and the resulting commitment to the royal throne, is a treatment that is sufficient for many people. Some people need to add rifaximin (brand name Xifaxin) which basically works in the digestive system to eliminate naturally occurring bacteria in the digestive system that help breakdown food and produce the toxins that contribute to HE. You might want to talk to your doctors. There is a balance that needs to be struck with diet and medications but hopefully you, your husband and the rest of your team can work together to find it. Remember that the diarrhea that the lactulose causes dehydration which needs to be compensated for.

Hope this helps!

Dennis

Thanks, Dennis. The medication that he started on which helped so much was Xifaxin. I didn't really expect the HE to disappear completely...but I also didn't expect it to return with such a vengeance.

Dennis made the note of DEHYDRATION which can make HE worse. My husband's last severe aggression issue was likely connected to dehydration. He told me the following day that though he'd had diarrhea all day, he forgot to drink more than about 4 ounces out of his cup.

Since then I've added a 'keep an eye on Mark's cup' to my list of things to do.

Hepatic encephalopathy may be triggered by:

Dehydration

Eating too much protein

Electrolyte abnormalities (especially a decrease in potassium) from vomiting, or from treatments such as paracentesis or taking diuretics ("water pills")

Bleeding from the intestines, stomach, or esophagus

Infections

Kidney problems

Low oxygen levels in the body

Shunt placement or complications (See: Transjugular intrahepatic portosystemic shunt)

Surgery

Use of medications that suppress the central nervous system (such as barbiturates or benzodiazepine tranquilizers)

http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm

Sorry, the QUOTE thing is not working quite right so I tried to quote each line instead of the entire list. Quoting the entire list only marked the top line.

Post edited by: TamieJP, at: 08/19/2011 07:22 AM

Tamie, that was very helpful, thanks! I never realized there was such a long list of things that could cause his HE. Despite my insisting that he takes liquids throughout the day because of the lactulose, I see that I may have to monitor that more closely. And he is taking diuretics, so I will make sure he gets enough potassium. I'd been afraid of him getting too much, since that has been an issue in the past.

Ahhh HE, lactulose, dehydration, protein, too much potassium, too little potasium, too much liquid, not enough liquied.... the list seems to keep growing, doesn't it?

My take on protein? We ended up staying away from ANY animal flesh. It seems the closer to human the worse it was, so first we eliminated mamal flesh, then poultry (land animals), then fish (vertebraes) and finally shell fish. Plant based protein was ok, nuts, soy and beans.

Lactulose: (I also took xifaxin/rifaxamin) at times I'd take up to 40 ml every two hours. That extreme was never for more than about 12 hours before I'd "perk up"

Thanks for your input, Mike. I have been wondering if his latest bout could have been brought on partially by the chicken I made him the night before. Although the Hepatologist (sp?) gave us the go-ahead to eat it, not much else has changed in his daily routine.

Yes, the list definitely does seem to keep growing. Walking a tightrope between too little of this, and too much of that seems to be our new way of life.

Post edited by: RandomLady, at: 08/19/2011 09:46 AM

Hi, I am new to this forum. A friend told me about this site. It's been really difficult for us lately. My husband is experiencing the same thing.

I didnt realize howmany folks are going through the same thing we are.

It is really hard HE is manageable, for my dad we use Lactulose. Agression is something common in HE but he has been that way even before we knew about cirrhosis. Watch out for the itching, confusion, bad body odor, and not caring for it's personal appearance for me that's a red flag. Biggest red flag is change in sleeping pattern becoming a heavy day sleeper. I would take the person who has cirrhosis to the E.R. soon after those warning signs because then it can progress to level 3 HE, somberness to coma. It was scary to see my dad that way, they has to tie his hands in the bed as he screamed and yelled, he had pain but didnt know how to control the pain other than screaming, like a small child. Luckily he was brought back to better conditions within a week, we learned the hard way. We never knew.

Ahh yes, the restraints. The first time I didn't know I was restrained for a couple of days, then it was "What????" But I had been striking out at people etc. By the time right before my transplant, though, I would actually ask for restraints so I wouldn't hurt myself or anyone else. For my wife, the best indicator, besides apparent fogginess, was small hand movements: i.e. my signature. If that was worse, I was having problems.