How Hepatic Encephalopathy Causes Confusion and Memory Loss in PBC

I was diagnosed with PBC in 2021, around the same time my Mom died from COVID. I was settling my mom's estate after her passing, and then working as a radiologic technologist at a city trauma center. My nights were busy with patients; my days were filled with probate, insurance companies, banks, and lawyers. I was exhausted, and some days I barely slept more than 3 hours.

After finishing one long 12-hour shift at the hospital, I started my hour-drive home. I looked down and I was low on gas. Upon pulling into the gas station I suddenly couldn’t figure out how to align my car up with the gas pump. I became so overwhelmed, I began to cry. I immediately realized something was wrong, but I didn’t know what it was.

What was causing my confusion?

I called my husband, and through the tears, I explained to him what happened. And he said, “it's ok, maybe you are just tired.” I saw that I had enough gas, so I got back on the road and headed towards home.

For the next two days I just felt like I was walking around in a fog. I couldn’t think clearly and I was just completely exhausted. I had no explanation for what happened earlier in the week, so I decided to just get checked out at the ER.

What my doctors suspected

After having blood work done and a CT, the doctors initially had no medical reason for my confusion. The doctor thought it was the stress of working overnights, dealing with my mom's estate, and my long commute home from work.

At my next hepatologist appointment I mentioned to my doctor about the confusion I had. They said it could be hepatic encephalopathy, HE for short. With liver disease, the liver can no longer filter out the toxins and waste products. These toxins cause an increase in ammonia levels, and can affect the brain and cause confusion, memory loss, and can lead to coma or death.¹

The hepatologist said HE was an unlikely diagnosis because my ammonia levels were normal. However my PBC had since gone from F2-3 fibrosis to F4 cirrhosis, so hepatic encephalopathy couldn’t be completely ruled out.

Experiencing severe confusion again

Then in December 2025, it happened again. I just pulled into work and suddenly I couldn’t find the entrance to the parking garage. Finally, I found a spot and I just brushed it off as being tired.

I woke up the next morning completely exhausted. I replayed my last three shifts over in my head. I found myself taking longer to make decisions. I was asking the most random questions about my job - a job which I had been doing for 20 years. Still feeling a bit confused and foggy, I immediately messaged my hepatologist to tell them what was going on.

The next hour and a half was a complete blur to me. I suddenly found myself in my bed with no recollection of how I got there. I looked over at the clock, and an hour and a half went by. What just happened? I was now more confused than ever. I began to cry and I called 911. I knew something was just not right.

After a two-day hospital stay, I received the official diagnosis of hepatic encephalopathy.

The reality of living with hepatic encephalopathy

Since diagnosis, my episodes of hepatic encephalopathy have increased. I lost my independence. I can no longer work. Longterm disability denied my claim. It had a pre-existing condition clause and would not cover me because my hepatic encephalopathy symptoms began over a year ago. I applied for Social Security Disability, but approval can take over 200 days.

I currently have no income. It is no longer safe for me to drive. Sometimes I hallucinate and see things that are not there. I can’t cook unsupervised anymore because I almost burned my house down on three separate occasions. My husband describes it as taking care of his Dad, who died from Alzheimer's disease.

How I handle my new normal

I take medication to help alleviate the symptoms. I think the only cure is a liver transplant, though. All I can do is wait until I am sick enough to be added to the transplant list.

In the meantime, “what was I saying?” Just kidding! All I can really do is make the best of it and laugh about it. This is my new life, my new normal.