I have questions about Hepatic Encephalopathy

Hello and welcome to Connect @sharonagnes. I suffered from “brain fog” several times prior to my transplant, ending up in the emergency room. I was never found to be in full blown HE, however. But my hallucinations and confusion were definitely intense, as was my stubbornness, although I don’t remember much of the events…just the tales of what I did.

It’s very important that he takes his lactulose as prescribed. I don’t believe there is an alternative, but you should consult with your husband’s liver doctor and let them know about his ongoing issues. He may need to increase his dosage…that’s what I had to do. These occurrences are common in Stage 4 liver disease. Lactulose, eating well, walking and movement, as best as possible, are essential so that he can be in the best shape possible for his transplant surgery.

How are his ascites?

I’ve attached a couple documents you both may find helpful. Also, if you’ve not been to the UNOS website, it has excellent resources - https://unos.org/

Best wishes and let’s us know how you and your husband are doing. It’s not an easy journey…so, stay strong and positive! It’s good you’ve discovered Connect, I wish I would have when I was in stage 4!

@sharonagnes, I want to welcome you (and your husband) to Mayo Connect. I know from what my own dear husband experienced as my liver/kidney transplant caregiver that your role caregiver is a difficult one.
Hepatic Encephalopathy is a buildup of toxins in the brain.. A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. With time, hepatic encephalopathy can progress to unresponsiveness or coma. As a patient with liver disease, I was alerted early in my treatment to be aware of HE, and at each appointment my husband was asked about any signs of HE.

I am happy to see that @athenalee has already shared information that I hope that you will read.

I want to invite @kltchrmn, @contentandwell, @jodeej, @gaylea1 to this discussion and to share an update about their experiences with HE, Lactulose, and post transplant life.

I have located some information about experiences with HE and lactulkose on the first 3 pgs of the transplant Discussion > Liver pre-transplant question https://connect.mayoclinic.org/discussion/liver-pre-transplant-question/

@sharonagnes, How often does your husband see his doctor? What are they saying to you about his moods and a possible medication adjustment?

Hi, @sharonagnes Welcome to Connect.

I was diagnosed with HE but my symptoms were very similar to @athenalee's. HE was actually the first strong indication that there was something wrong with me. My first episode was mild but I was definitely not myself. That occurred on Christmas Eve, 2013. I did not get a diagnosis of non-alcoholic cirrhosis until April of 2015! During that time I had these episodes off and on and no one could explain them. I was sent to a neurologist and he was the doctor who suggested it was my liver that was causing my problems.

When cirrhosis was diagnosed I was put on lactulose at my local hospital - I had inpatient stays a number of times. I then proceeded to go to a hepatologist at a transplant hospital. She changed me to xifaxan without lactulose. The xifaxan kept me HE free from about June until March. At that point the HE episodes started to recur so obviously my liver had deteriorated and I needed to take both xifaxan and lactulose. Even with both of those medications, I did still have some episodes. I never had any "brain fog" between episodes. I was able to live and function as always. I would either wake up having an HE episode or get a bad stomachache which would foretell an HE episode. Anytime I had the slightest stomachache I dashed right home so I would not be out with an HE episode. Sometimes nothing materialized though.

As @athenalee mentioned, he may need to increase his lactulose. I was told it's one of the very few medications that the patient needs to titrate themselves. I generally took about 32ml 3 times a day but there were days when that was not enough and days when it was too much. I'm sure that was related to what I had eaten that day. If it wasn't enough I would take some more to get things moving. If it was too much I stayed very close to the bathroom.

I had my transplant in September 2016 and have never had any problems since then. I had a remarkable recovery and was back to normal life within two months. During the wait (I became a transplant candidate I think in June 2015. I'm not 100% sure when everything got approved though) I was doing my shopping, cooking, socializing, and going to my health club. It's important that your husband tries to be in good shape prior to transplant because that will make for an easier and quicker recovery. I also lost a ton of weight. I was very overweight which is more than likely what caused my cirrhosis.

I will be looking forward to hearing when he becomes an official transplant candidate and what his MELD score is. When I became a candidate mine was in the low teens but it quickly was increased to 18 because they found malignant lesions in my liver. My MELD at transplant was 28 which at that time was low for a Boston hospital. My transplant was at Mass General. I believe my blood type helped me get a transplant at a lower MELD than usual in Boston.
JK

We have an appointment tomorrow. We are hopeful to see if he is healthy enough to be put on a transplant list. He wasn't healthy enough to be considered when we last saw them. Prayers, please.

Wow. JK…I can’t imagine having recurring brain fog like that, especially when you didn’t know why! Good thing your neurologist was on top of it.

Lactulose, besides being one of the foulest tasting things on the planet, can be difficult to regulate. I had issues where it made me vomit, so I stopped taking it. That’s when I had my first brain fog. So, I was prescribed something to help my stomach and kept taking …with orders to not stop again or I’d likely die. So, I didn’t stop until my transplant!

@sharonagnes, yes, I will keep you and your husband in my prayers. I hope that tomorrow’s appointment is a successful one. Try to get some rest tonight because tomorrow could be a long day.

Does he have a diagnosis for his liver condition?

@athenalee It was not a constant fog at all, it was episodes of confusion and irrationality. The PCP I had at the time called me on the phone and told me she thought I had Alzheimer's! The neurologist literally laughed at that as did another of my doctors. That was when I changed PCPs.

I really was miserable to not know what was wrong with me though. I was pretty sure it was not Alzheimer's but I did worry that there was something wrong with my brain. I was depressed often. It was actually a relief to find out that I had cirrhosis and needed a liver transplant!
JK

We have been told it is stage 4 liver disease and stage 3 kidney disease.

I think we all can agree we wouldn’t give Lactulose to our own enemies. When in the hospital for 10 days I decided to try adding it with my syrup for French toast and pancakes. I also added it to my hot fudge sundaes, and I am sure we could find other ways. It wasn’t the best, but it was MUCH better. Maybe we could swap other ideas?

Hi, @melody12. I absolutely love your creativity! We patients learn so much by sharing with others.
I was fortunate to never had the Lactulose experience, so from what I am reading it must have been awful. Are you still taking it? If so does it get less awful over time? What has been your favorite 'recipe'?