Angie M.

Caregiver for Brother…

I am responding with my experience with HE as I was a caregiver for my brother, Javier Nunez, who passed away 8/8/11 due to a brain hemorrhage 3 days after transplant.

Our story began in February of 2010, we received a phone call from a hospital notifying us (my family) that Javier had been brought into the emergency room the previous day and had been admitted into the ICU. My brother had been found disoriented and wandering about Rogers Park (Chicago). Apparently, this was the point when HE really kicked in and up to the day before he was found, had still be working full time as a stationary operating engineer. He was hospitalized for about 3 weeks and his HE symptoms decreased significantly but not completely when he was discharged. When he was released we received a long list of medications including Xifaxan but the instructions were to “take as a needed to prevent diarrhea”, he was not prescribed lactulose. A few days later his hands were shaky and he was talking slowly sometimes not making sense. We called the discharging hospital with the number provided on his paperwork and their initial response was that it seemed like he was having mental problems and we needed to contact someone else. With a few more persistent phone calls, we finally got a doctor to call in a prescription for lactulose. The Lactulose did help with the HE symptoms but from that point on it was like walking a tightrope.

My brother’s “tell” was almost always his hands. If his hands were shaky, we knew that his ammonia was creeping up and that he needed more lactulose. He was also prescribed Xifaxin regularly. However, more lactulose didn’t always do the trick. When HE progressed, Javier would have difficulty communicating and just couldn’t “get the words out”. Other times he just did not make sense or forget where he put things, had difficulty following instructions or remembering how to operate devices such as a cell phone or computer. Physical movement became slow and a blank stare would develop. As HE progressed he would not hold his mouth closed, his lower jaw/lip would hang down. He would need help going to the bathroom. He would become more and more sleepy and at its worst would be almost comatose. I knew that when he was getting more and more sleepy it was time to go to the hospital. There were a few times during these hospitalizations when Javier became very upset because he didn’t recognize where he was or why. There were also times when he thought he was “going crazy” and was afraid that we were going to put him in a mental hospital. Near the end, when he was hospitalized he would hallucinate or think he was at home. At this point, he also did not seem to understand the severity of the situation which was I guess a blessing.

Although HE is difficult for the patient, it is terribly challenging for caregivers. Every day you have to find the strength to face another day and have no idea what to expect. From the time Javier had been discharged from the hospital the first time, he needed constant care, he could never really be left alone and so he had to live with our parents. You feel so much pressure to ensure your loved one is safe, getting the best medical care, taking their medications properly, managing medication refills and doctor appointments, taking care of their finances. You have to learn your loved ones HE symptoms and try to catch it before it gets worse. Ultimately, your loved one’s life is in your hands. The same month my brother passed away, we found out that my mom has also developed cirrhosis due to fatty liver disease (newly renamed to steatotic liver disease). She is currently on a Xifaxin regimen that did help bring her ammonia level down, so far her only symptom has been fatigue. Thank you for reading our story… I have lots more to share.

Last updated on January 17th, 2024 at 03:41 pm

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