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

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