Cirrhosis Support Group

Hello Trinac1127, My husband has a MELD of 30. He has HE episodes every now and then. When I see HE is coming on, I increase his dosage of Lactulose, until I see he snapping out of.......this is what our Dr instructed me to do. If this does not work within an hour or, off to the ER we go. Billy is also on a medication named Xiafian (spelling ?). This is suppose to help with the amonia levels to the brain.

Good luck and praying for you guys!!!

Cynthia

Dear Trina - I have no first-hand experience from which to speak (and am very fortunate that this is the case). I do however see where Cynthia has responded - and I'm certain that others here will be replying and offering suggestions. I've prayed for you this morning - for the Lord to grant you that extra measure of patience that you need!

Hi Trina,

My husband never "officially" had EH although I wondered sometimes.... His score was a 13 too but the varices are what was the worst for him. I almost lost him from the bleeding and he spent about two months in and out of the hospital.

I just want to wish you and your husband well. Being a caregiver is incredibly hard. I think it is GREAT that you pointed out Hospice. Hospice is not always "deathbed only" service.

My husband's cirrhosis is from alcohol. However, cirrhosis is cirrhosis once you have it. He changed his lifestyle-absolutely no alcohol so make sure your husband does not drink ANY alcohol. It is poison to a comprimised liver. He also quit smoking and added a regime of vitamins and supplements. He cut his sodium-we are all on a low sodium diet here. He drinks more water and rests often. With the summer heat, it is very important that he is drinking water.

Take care. I hope things improve for both of you. Are you see a liver specialist?

Thanks for the support and advice. He is seeing 2 liver specialist. He is somewhat reluctant to take more lactulose when his EH gets worse. I feel at times like he is my second child. It is very frustrating.

Hi Trinac1127,

I wanted to second Cynthia's point about upping the Lactulose. Husband was hospitalized 3 times for catatonic HE episodes over 6 months. With the 3rd stay, our GI brought in 2 more doctors. As we were exiting the hospital that 3rd time, one of the docs was reviewing his med. protocol and crossed out his typical 30 ml. x 3 (Lactulose) and replaced it with 45 ml. 3 x daily. It flushed out everything bad and good in him. That first week at 45x3 (135 ml daily) was awful for him...awful to the point that week two we reduced the dosage to 45 ml. 2 times daily. (I was concerned about dehydration.) Then 45 ml. once daily. Today (18 months later) he takes 45 ml. about every 3rd day. Long story short: 45 ml.(x 3) of Lactulose did the trick. Knock on wood, Husband has not had another HE episode since that moment when the doctor scratched in that 45. Husband even has had a TIPS with no HE complications.

I know that everybody is different here. But that is our story.

Hope that you and your husband tame the HE beast soon. It is awful, awful, awful.

You are in my thoughts.

M

HE is very scary for both the caregiver and the patient. I take Lactulose daily and have found the two doses I take has really helped me with the HE so far. I also determined that the episodes came on when I had gone too long without drinking water (dehydration again in spite of the huge amount of fluid in abdomen and legs/feet). Also, when I go without eating for long periods of time. I used to eat once a day a regular meal and just a few small snacks during the rest of the day. Now, I have 2 or 3 "meals" and fruit or cut-up veggies to snack on whenever I want.
Seems to be better for me to just not let myself get hungry.

I could tell when an HE episode was coming although did not know how fast or how long they would last. I would begin feeling nausea and dizzy even while sitting down. A general feeling of something being "wrong" is also what I feel like when an HE episode is on it's way. Don't remember much during the actual episodes although husband said they were really strange. Afterwards, I would break out in a profuse, drenching sweat and was exhausted. Would take a shower and sleep for a day or so.

I pray for you as caregiver as well as all of the others here who are faced with caring for patients with cirrhosis. It has to be difficult. My husband had polio as a child and is realizing now his limits from the damage done early on so he is limited in what he can/can't do to help me. But, he is here with me and always here when I "come to"........Thank God. You and other's like you are really a blessing to the patient even if we don't always let you know. Rest assured, we as patients do know that we would be lost without you.

Anyway, all that to say that it would be a help if you or husband could somehow determine what the triggers are that start an HE episode and perhaps alter those things that you can. Doctors don't always know what the patient needs so some of the care is up to us. This is one disease that follows no certain formula as it is different with everyone. I would think that someone who is incapacitated with HE symptoms would be ready for transplant but am told it is strictly by the MELD score numbers. Makes you wonder "how sick is sick enough"?
Hugs and prayers for you and your husband........CarolLentz

Hi Trina,

I too walk in your shoes. What a cruel twist of fate that your husband has developed this awful disease out of the blue. My husband also has cirrhosis, but has been an alcoholic for about 35 years. Just in the past few months has the consequences of his drinking come to the point where his health is at a major risk. He was recently hospitalized after being "dazed and confused". His ammonia levels were not that high, but he is also very anemic which can affect mental status. So, now he is on both Lactolose and Xifaxan and doing a little better. The Lactolose absorbs ammonia in the intestinal tract and it is eliminated, and the antibiotic kills off the bacteria in the gut that produce ammonia. Once he was on those, his ammonia returned to normal very quickly. He had to have 3 units of blood while hospitalized to build up his blood. His hemoglobin was 6.6 when he was admitted, with normal being 13-17. It can be very dangerous to have a hemoglobin that low, risk of stroke and heart attack. So, how to deal with all this. It is hell, and I hate it. Just trying to get through one day at a time. I go to some private counseling, and that does help. I try and do things that I enjoy when I can. You have to take care of yourself too, or eventually you won't be able to cope with taking care of him. When your spouse is not in his right mind, it is the most difficult because you can't rationalize with a person who isn't really rational. Do your best and ask for help from friends and family to back you up. Perhaps if he gets on Xifaxan, it will control his HE symptoms better than just the Lactolose. Check in here to get more support. I'm new to this too. My husband is in treatment for his drinking and I am praying that he will come out of this alive. He has to be decomented sober by the program for 6 months before he can even get on a transplant list, so he has about 5 months to go before that.. He dragged his feet on starting the program, even though he had quit drinking about 2 months before. Hope it doesn't mean the difference between life and death. It's a very scarey situation. I'll be here if you need someone for a sounding board. Cali-Flicka

Hi Trina, my prayers are with you, your husband and all of your family. H.E. was the worst part of cirrhosis for my husband. He started having episodes shortly after his diagnosis in 2002. As Carol mentioned in an earlier response, finding out what triggers it is a must. My husbands Dr. had us meet with a nutritionist early on and for years lactulose and a diet of limited meat protein helped us keep it under control. Ask his Dr. if it would be possible for him/her to arrange such a meeting, ask for other suggestions how to handle.

In 2008 it got to the point where it was always evident. No so much the confusion, but it effected his cognitive function. When he talked he slurred, when he walked he stumbled. His dosage of lactulose increased to 30 ml 4 times a day and 550 mg xifaxin twice a day, everyday. We would increase the lactulose when we noticed the slightest bit of confusion and/or his hands shaking, as instructed by his Dr. We also went on a mostly vegetarian diet. Unfortunately, as his MELD score increased the H.E. got worse and the lactulose and xifaxan wasn't doing much good. Before his transplant in March the Dr. told us he was close to the point of being hospitalized all the time because of the H.E., that we would no longer be able to control it at home.
I know I had days when I wanted to run away. Prayers, prayers and more prayers got me through the days and nights. I will keep you in my prayers for patience and guidance as you deal with this horrible disease. Take care of yourself as well.

HE is my husband's worse side affect. It is horrible and I know exactely what you are going through. My husband takes 75 ml of lactulose three times a day and 550 mg of xifaxin twice a day but is so out of it some days. What is getting me through this is that he is still alive and he has always came out of it. Just know that you are not alone. I retired early to take care of my husband but I was lucky the company I worked for offered early retirement. Stay strong and hang in there.

Thanks for the comments. It makes me feel better just knowing we are not the only ones going through this. I also realize that our situation could always be worse. My thoughts and prayers go out to all of you who are living with this disease and for those who care for them.