HE (hepatic encephalopathy) To tell or not to tell

last time we saw the doctor he asked if I noticed any changes in cognitive function. Although I do, since my husband was sitting right there, I said I didnt. The other day, he denied knowing about an event. This scared me. I didn’t say anything to him about it at the time and wonder if I should. Any insight on the topic of HE would be great.

I had encephalopathy when I had PSC. Received a transplant in 2012. I was barely aware of my forgetfulness, but it was BAD. It is more embarrassing to learn you have it after you have made a fool of yourself. Please share your observations with your husband. Hold firm to what you said, because if he is like me, I denied my wife's accuracy. Once he knows your viewpoint, move on to the next phase which is leveling with the doctor about what is happening. My doctor put me on Lactalose, which is a laxative that binds ammonia to itself and eliminates it. Memory will improve, but maybe not back to normal. Ammonia buildup results from the liver not doing its job of clearing it from his system.

As far as boating, that's an individual thing. When I felt my ammonia level was under control, I would ride my motorcycle. I think I would have the safety discussion with your doctor before heading out to sea with encephalopathy. A fellow liver transplant patient friend had a terrible case of encephalopathy and Lactalose did not help him. Lactalose is a sweet syrup medicine. Too much and you have diarrhea. Too little won't help. With practice, you find the amount that improves your memory. I noticed improvement in 2 days.

Be honest with him about what you see. Getting back to the doctor with the information is the quickest way to improve his memory and save him embarrassment.

Hi Cat Flower,

thank God I do not have that problem. But I strongly believe that not talking to your husband is much worse than any discussions arising from talking to him.

Paul ist right! It would be wise to follow his advice.

Merry Christmas anyhow and all the best for you

Rippi

Dear Cat Flower,

My mom had encephalopathy that would get quite bad, where she would actually have trouble with motor skills. The doctor said the brain actually forgets movement because the thinking is clouded by the ammonia buildup. My mom was never aware that it was happening, and would later deny that she was altered previously. When the ammonia was really high, she got very quiet, as if speech centers were not working then either. She said her brain was quiet at those times. Those were her words. At the start of the high ammonia levels, she could still drive. As it progressed, she could not drive anymore. I do not think that it would be safe for your husband to go out alone on a boat, but it would probably be ok with an experienced sailor as the second person. As Paul said, Lactulose really helped A LOT. The dose would change depending on the severity of the encephalopathy. It is a fine balance between the Lactulose getting rid of the ammonia and getting diarrhea. In the beginning, the Lactulose was very effective at low doses. However as things progressed, she had to take a dose that would give her diarrhea, on purpose. It was the only thing that would drop the ammonia level down. At the higher levels of Lactulose, she had to drink more liquids, due to the water loss with the loose stools. Has your husbands doctor asked you if the car has any new dings or new dents in it? That is one sign that there is a problem cognitively while he is driving. I used to call Lactulose the miracle drug. It is very benign, and is a crossover drug, given to both dogs and cats as a laxative. The only bad thing about it, is that there is not an immediate response from it, it takes a day or so to work. That is why it is better to take it on a regular basis as opposed to once in a while.

Your husband will not realize that he is altered when the ammonia is high. I know how frustrating it can be to argue with them when they are like that. The doctor will be your best friend in getting your husband to understand what it is, and that he will not even know when it is happening. My mom was told by her doctor that I would be the best judge of how she was mentally, and she did not like that at all!

Do you have any children that can attest to your husband that he was altered mentally? It might be good for him to hear it from another family person besides you.

I stressed to my mom that it would come and go. In her case, it depended A LOT on her diet. She could not eat fatty red meats or fried foods, or items that had a lot of salt. That would bring on an immediate bad response as the liver could not clear any of those toxins from her brain and blood. She could not eat gluten, if she ate a piece of bread, it kicked in a bad auto immune response and high ammonia levels happened. Even if she ate something as simple as too much protein in one meal, as opposed to protein balanced by good carbs and green veggies, she would get high ammonia levels.She ate a lot of fresh fruit, lean meats, lots of different fish, healthy grains and brightly colored vegetables.

For the most part, with the lactulose, she was fine for several years, with just mild adjustments needed. I know that you and your husband will find the right balance of Lactulose, food and care that will keep him mentally sharp!

It can be done!

Cat, with what patients and caregivers go through, there is nothing wrong in asking for help.

Hi, I thought I'd chime in.

I've recently come to the conclusion that at least in my case mild encephalopathy isn't accompanied by higher ammonia levels. When I has severe encephalopathy, I definitely did have higher levels. But I regularly experience up-and-down levels of mental fuzziness and confusion, my wife talks about an event and I am sure it never happened (sometimes a few hours later it starts to seem familiar), I'm significantly more clumsy than usual. But at these times when I have my ammonia level tested, it is normal. I ask my Dr what's up with the discrepancy between how I'm feeling and what the blood test shows, and he's not surprised, he considers it a normal part of the disease.

I find that I need to be very conscious of these ups and downs just to be safe. And as others have said, I'm often not the first one to recognize that I'm more confused – until after I have dropped and broken a few dishes, or realized I didn't know where I was in my own neighborhood, or had trouble thinking what 5 plus 8 is. It has been very useful to me that my wife is very direct with me when she notices that I am not on the ball. It is a matter of safety, it reminds me to slow down and be more careful.

CatFlower,

As hard as it is to see our loved ones suffer especially memory loss and confusion, I believe you need to be as honest as you can with him about these things. Perhaps for important things in the family such as significant events that you mentioned, maybe it would be helpful to you and he both if you were to document it the event on paper with the date and time. This might get a little touchy but perhaps you both could initial beside it and just state, you know honey sometimes I don't always remember things like I would like to be able to so perhaps we could write these things down and both initial them, so if we have a question later we can look back at our log. It may be good to speak with his hepatologist about the boat before you agree to that step if his condition is really worsening . Like some of the others have said, they may be able to give him something to help the ammonia levels, etc.

I will be praying for you both. He needs to know from you that liver disease does some strange things to the human body and sometimes affects us in ways otherwise we would be perfectly normal. It messes up our chemistry.

Merry Christmas & Happy New Years!

Hello, Cat. My fiance nor his doctor caught on to the H.E. as quickly as I did. Although I totally embarrassed my fiance bringing up the issues I was seeing (mood changes, forgetfulness, confusion, etc.) in the end it took a great deal of stress off him to know there was a answer as to why his mental health was a little off. I told the doctor I was noticing changes and asked that his ammonia be tested. Sure enough his level was elevated (slightly). We watched it for a few weeks. It increased. He was prescribed Xifraxin twice daily. His levels improved. There were other meds offered should the level of ammonia not decrease but we haven’t needed it. My loved one went back to being is annoying ol’self and I’m SO happy. :wink: God bless. Keep us posted.

Oh! I forgot to mention, I had made it a habit watching my love eat, sleep, brush his teeth, ramble about sports, etc. It was by picking up on small changes (like how he’d forgot he already grabbed a fork for dinner or how he’d get angry over the dog jumping on him without a green light) that our doctor wouldn’t have seen that helped me. You are your partners best resource. If whatever you do is out of love I’m sure your partner will be appreciative in the long run. :slight_smile:

Hi Gloria,

Hi Glori (and Cat),

I wish that I had known about this forum when I started taking care of my mom. I did not know then that the occasional broken dishes, difficulty brushing her teeth as easily as she use to do, and being more argumentative was a sign of H.E. It took a while for me to figure it out and question if it could be H.E with her doctor. Her ammonia levels usually showed an elevation. What area in CA do you live? I am based in the San Jose area in Northern CA, and there is a long wait in this area for transplants.

My prayers are with you both,

Jill

Gloria said:

Oh! I forgot to mention, I had made it a habit watching my love eat, sleep, brush his teeth, ramble about sports, etc. It was by picking up on small changes (like how he'd forgot he already grabbed a fork for dinner or how he'd get angry over the dog jumping on him without a green light) that our doctor wouldn't have seen that helped me. You are your partners best resource. If whatever you do is out of love I'm sure your partner will be appreciative in the long run. :)

Hi Cat Flower,

You are right, it can get expensive with outside caregivers coming in. However, with Obama health care now available, and open enrollment until Feb. 15th, this is the ideal time to make the switch in insurance. If you are getting health care now through your job, you can get Obama care anytime if you decide to leave your job and your work insurance ends. There is no pre existing exclusions anymore, so that is great for your husband. He might have to switch to a new doctor team, but you might be able to keep his existing doctors depending on what insurance is available in your state through Obama care. I am in CA, and we have something called CoveredCA that is used for Obama coverage and is partially or fully funded by the state. So, even if you are working part time to bring in some income, you would be eligible to have a partially funded insurance plan. I do not know much about SS disability. I have heard from some folks that it takes up to a year to get it and might need a lawyers help, and I have heard that others have done it faster and no lawyer was needed.

Did you contact the Social Security office in your area to find out?

I hope that today was a good day for you both and that tomorrow is even easier and better.

Jill