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.

One of the most difficult challenges of advancing liver disease is when it can no longer manage the ammonia in the blood well.  Ammonia is poisonous to the brain and mimics dementia in many ways.  It can be subtle but it is a challenge for a patient and everyone around.  Some are able to keep a sense of humor for a time.  A friend gave me permission to tell her story here, anonymously of course, as an example of how a bit of ammonia can disrupt your day.

I suppose it's not a bad day when you are headed out the door with your purse and pants and shoes even had my car keys! Just forgot I needed a bra and a shirt. I inhaled a big amount of lactulose after that. Thankful I didn't go out but it's time to get a babysitter for me I think.

Most patient stories are about getting lost, driving and having accidents, or conflict with caregivers.  The great difficulty is that the personality changes are often destructive and the poor patient is a blameless victim but is the center of drama or conflict as a result of a medical problem.  Something to keep in mind when you see an apparently deranged person on the street.  

It is a failure of our system that so many liver patients are destroyed financially by this disease and end up in desperate situations and are uncared for.

Well, a story of disease that had a chuckle in it has turned a bit preachy so I'll stop but HE is one of the challenges our patients deal with that is not typically understood when mild.