Hepatic Encephalopathy (HE) -- A stranger lives inside me.
I've talked with many who have experienced the condition but this was my first time. It was very different from what I imagined. This blog is particularly aimed at care givers and family members who find themselves interacting with someone that they don't recognize.
It is not an uncommon course with this disease in its advanced stages for the patient to become angry, short tempered, and even mean. We see reports from people who no longer recognize their loved one. The warm, gentle, loving person they have known has somehow become a vengeful tyrant. This makes the job of caring for the needs of that patient very difficult. I can't help much to lighten the burden but perhaps a bit of understanding can make it easier to accept.
When I was delivered to the ER due to critical calcium levels I was at risk for a heart attack and/or kidney damage. It was a clear emergency and I'm fortunate to have suffered no long term damage to either organ. I credit my wife for acting when I was not capable of much rational thought.
As I've had time to reflect on the experience I realize that I also had my first experience with encephalopathy. I've talked with cirrhosis patients who suffer with it and have a new appreciation for the complexity of the event and thought I'd share a few thoughts which might be useful to folks at risk and their care givers.
The thing that surprised me most was that it wasn't a blank place. A personality lived there which I guess was me but it was foreign to me. I easily became that person and I had control of my body but the emotional world I lived in was quite different from my normal life.
I don't think I ever reached the full expression of HE as I spent several days in a strange in between place where I was aware of both sides of that event. I'm sure that there were times when I became the "other" person and was cut off from my normal self but I believe those were brief.
The "other" person that I saw was watchful, aggressive, and easily angered. Quite capable of lashing out and uncaring about the feelings or safety of others. Quite unlike who I fancy myself to be. I was shocked by the high level of stress that seemed to drive my "other".
I believe there is a good explanation for what happens to us with HE. The modern human brain has a large cerebrum where we know that most of the processes that make us what we think of as civilized reside. We never think about the brain that developed over millions of years and allowed our species to survive before the modern brain evolved. I've seen that called the reptilian brain and it is more primitive but governs much of what happens out of sight of our conscious awareness. The beings who lived long before us survived by being constantly on guard. Aggression usually won a disagreement. Kill, flee or be killed was a common situation. I believe that that evolutionary heritage lives in varying degrees below the civilizing processes of our modern anatomy. Our modern brain can be overcome by changes in chemistry and the older, more ingrained responses can express themselves. That suppression of our normal mental state is what we call HE.
We see the altered personality in advanced liver disease but I think it is part of society in broader contexts as well. The very dramatic examples are probably cases where someone suddenly murders people that they seemed to love. Psychotic breaks are likely examples of a sudden dominance of these far older responses. Those are the headline producers but we see many angry, mean patients that require care in the grip of illness as the common expression of this "other".
I realize that this discussion does not solve any problems, but perhaps understanding that it is a burden for the victim of HE as well might help. It does represent the loss, temporarily perhaps, of important aspects of our personality and puts us in the grip of emotions not subject to the calming influences of our normal processes. To the extent we remember we likely have regret for our actions.
A final thought. Not everyone has the same experience. Some people become far nicer with HE or become clingy or afraid. Others seem mostly normal but may forget to put clothes on when going out. There is wide variety in response but all are the result of the suppression or alteration of the normal brain functions due to chemistry changes. They deserve compassion not anger.