Encephalopathy

Welcome to the Hep forum, srshamp. Glad you found us. We are those with liver disease, as well as those who love them. My husband, themister, is the one living with ESLD from Hep C.

Medications really interfere with HE. The worst offenders are Ambien, pain meds like oxycodone, anti-anxiety meds (xanax), and many anti-depressants. A lot of liver folks also take meds for other things, or for depression and insomnia. Once HE comes into the picture, those meds that never caused any sides in the past can trigger significant HE episodes. Does your guy take any of these things or have a TIPS? TIPS can make HE worse, as well.

Again, Welcome. Big Hugs

When I felt "stupid" from HE, it was time to take more lactulose. Some mornings, I'd start out with my usual dose (30 cc.) and then wait a half hour. Then, if tying my shoes took more than a few seconds, it was time for another dose. Wait a while and sometimes a third swig of lactulose. Usually the rest of the day was fine, until around dinner. Once I got tired, it was time for more lactulose and later to bed. You can't overdose on lactulose, though diarrhea will dehydrate you, so drinking lots of water is important. Your husband should be having several bowel movements each day to get rid of the ammonia that brings on HE. I usually had 4-6 a day, which isn't much fun, but it did help me stay in control.

I also used trazadone to help sleep. After a few years I switched to ambien. I never noticed a difference when using sleep aids, but know that it does affect many people. Since you don't know what TIPS is, I'll assume your husband hasn't had one. Do a search here, if you're interested in what it involves.

en.wikipedia.org/wiki/Transjugular_intrahepatic_portosystemic_shunt

We also have a hepatitis resources sticky you may want to look at when you get some time.

My husband had TIPS in Jan. 2013. He was having bleeds that could not be banded. He was told to get listed for a transplant. That was the end of 2012. He did not have HE prior to the TIPS.

Here is a good documentary on HE for you. I know you are familiar with HE, but thought you may wish to see this. Be certain to watch the clips with the doctor's reviewing the documentary.

www.hesback.com

I would wonder if the medication for sleep complicates his HE. I do understand sleep reversal and know we need to pick our battles. I am not sure how serious your guy's HE episodes are, but themister's are pretty scary. The transplant shrink suggested Zoloft when since he looked flat, and she thought it would help him ease through this ESLD more gracefully ;)

Here is a link to our discussion on this forum when themister had a hepatic seizure from Zoloft.

www.healingwell.com/community/default.aspx?f=25&m=2979627

Here is a list of themister's meds:

40 ml Lactulose, 4 times per day
550 mg Xifaxan, 2 times per day
Nexium, 20MG, 1 time per day
Furosiemide 20MG 1 time per day
Amiloride 5MG, 1 time per day



HE stinks! I am so sorry your husband is suffering. I would also mention other things increase HE like fumes from paint, various other chemicals, and it can be worse right after a large meal.

Does your husband know when he has HE? Mine does not. He thinks he is just fine, unless he is really, really impaired. There is some level of HE present most of the time, and has been since his TIPs, but the low level stuff manifests more in his personality.

How is his MELD score and is he on a transplant list?

You are welcome here. Big Hugs

I think since HE is not predictable, it is a very difficult condition to wrap our heads around. So frustrating. I doubt themister will be free of HE until he is transplanted. Is your husband doing any better tonight? I do want to mention this. Some kidney things look nearly the same. Check in with his hepa if you think things are not ok.

I hope your guy is at a transplant center with low MELD score liver transplants. Keep us posted. Big Hugs

Is your husband listed in the US? You have peaked my curiosity. I would love to know more about the system where you live.

I don't know how much you have read here, but themister is also waiting right now. He has been called 5 times. First call was as back up, and the man was too sick so themister was prepped. The surgeon turned the liver down.

The 2nd and 3rd calls were as back-up. He was at Mayo, but only had labs drawn and waited several hours. The 2nd call was transplanted, the 3rd was a cirrhotic donor, so no transplant.

The 4th call themister was the primary. He accepted, was prepped, ready to wheel into surgery... and the surgeon decided he did not want to use the liver.

Those 4 calls were Jan 16th-26th 2015.

The 5th call was about 2 months ago? The transplant center called before we left the house to say it was a no go.

We have heard nothing from the transplant center since. We go in again for his work-up next month and will determine if we dual list after that appointment.

Can you tell us more about your husband and how long he has been living with liver disease.

How is he doing this morning? How are you? Big Hugs

Mama Lama
I'm sooo sorry you had a rough time. My heart goes out to you. My husband doesn't drink at all. He had the casual beers in past but not heavy at all, and now nothing. He's been diagnosed with non-alcoholic liver disease. Cirrhosis. At first they thought it was due to hemachromatosis (aka high iron) because his ferritin levels were through the roof. He was having treatments for that but they said no he doesn't have that. But they haven't ruled it out as a possible cause.

He takes his lactulose & xifaxan faithfully yet still experiences Episodes of HE. This I don't understand. He hasn't been "mean" but will argue with me about something's he thinks he's right about when I know clearly he is wrong & confused. I too have cried. It is difficult to see him go through these episodes. He has always been such a strong and formidable figure, who can do anything. To see him turn into a person who can't dress himself or tie his shoes, or even feed himself..... It is the MOST difficult thing too see. It's all I can do to keep myself composed in front of him. I have to go on the other room & cry. He's always been the strong one who handled everything, and now........ He was officially listed this past December. I'm praying it comes soon.

Forever strong....

Last summer my levels of iron were high and I had to have a unit of blood drawn. I had been eating a lot of greens (baby Swiss chard, kale and spinach), so my doc had me cut most of them out of my diet. The next labs were back to normal. I got a kick out of seeing the unit of my blood with a hazardous materials sticker stuck on it.

srs,
The same thing for themister.

He was dx with Hemachromatosis by a GP, and again by another PCP... but never referred to a liver specialist. No one seemed very worried about more than a mention of this dx. That was 10 years prior to him being dx with Hep C, which no one ever bothered to test for.

Someone at his Mayo eval testing informed him he did not have it, just high iron numbers that liver people often have.

How goes the HE battle today? Big Hugs