For Caregivers

Samantha Wood

Caregiver for Husband

My name is Samantha Wood and my husband, Steven, was diagnosed with Hep C 9 years ago and cirrhosis and HE two years ago. This has been the saddest, depressing, and scary thing I have ever had to deal with in my life. Here is the story of Steven’s first HE episode:

No one had told us what HE was, so I was completely shocked when my husband had his first bad episode. He was working on my laptop to fix a problem it was having and when he was done, he went to bed. About thirty minutes later, he came out of the bedroom with nothing but a towel wrapped around (which was totally out of character) and was looking for something but couldn’t tell me what it was. He either forgot that he was looking for something or got tired and went back to bed.

Two hours later, he got up to go to the bathroom. He did what he needed to, came and sat back down on the bed and continued this cycle for about an hour. At this time, I was completely freaking out on the inside, but had to keep it together to get someone here to watch our son while I took him to the hospital. I finally get him to the ER and they tested his ammonia level and it was 184. I still had no idea what was happening to him. They admitted him in the hospital and tried to force feed him lactulose.

He was constantly trying to pull out his cath because he did not know it was there… I was scared out of my mind. I was afraid he would be in this state forever. His GI doctor came in the next day and explained to me what was going on and they finally got his ammonia down to normal ranges a couple of days later. I have studied this condition and with the help of friend on the ALF Inspire forum, I can now detect when another episode is coming on and most of the time can adjust his meds with the guidance of his GI doctor to where we can prevent these episodes from happening.

Let me know if you need anything else. People need to be aware of what will happen to their loved ones, so some type of prevention can take place and the fear can be reduced.