Waking Up Grumpy

A life lesson about Hepatic Encephalopathy

Photo by florencia martinez on Unsplash

It is early Wednesday morning and I don’t want to be awake, but here I am. It was the worst of nights. Every time I would fall asleep something would happen to wake me. Electricity going off, dog jumping on me, Scott wandering about and feeling miserable, hips hurting. . . I could go on and on. When the dog jumped on me, that was the final straw. I got up and made my coffee.

I may have slammed a cupboard door.

Yesterday I realized I couldn’t construct a coherent timeline for Scott’s declining health. As a survivor with a very tragic trauma history, new traumatic events always have a double impact—the event itself and the ways it connects to previous traumas. Everything about this current journey feels like it is happening both then and now. The events are like fragmented episodes that swirl like newly stirred cream in my coffee.

My job has always been to just keep plowing ahead.

There is a lot to be grumpy about and anymore I am quite adept at self-compassion. But the one thing I am most grumpy about today is that medical professionals did not recognize the impact of liver disease when it was staring them in the face. I understand that I didn’t. I have apologized to Scott for all the ways I did not understand and became frustrated with him. Poor guy.

Here is the medical term that makes me grumpy—for reasons aside from the fact that I cannot pronounce it:

Hepatic Encephalopathy

“Hepatic Encephalopathy (HE), sometimes referred to as portosystemic encephalopathy or PSE, is a condition that causes temporary worsening of brain function in people with advanced liver disease. When your liver is damaged it can no longer remove toxic substances from your blood. These toxins build up and can travel through your body until they reach your brain, causing mental and physical symptoms of HE.” (Source)

Yesterday, as I created the timeline, I realized that Scott has been showing signs of this unpronounceable condition since last summer (probably much earlier)—particularly from the end of July to mid-August. Because he was not yet severely impacted physically, the symptoms were very similar to mental health struggles which we believed had been resolved.

Symptoms

Symptoms of HE are graded on a scale of grades 1 to 4. They may begin slowly and worsen over time. (Source)

• Early symptoms may be mild and include:

• Breath with a musty or sweet odor

• Changes in sleep patterns

• Changes in thinking

• Mild confusion

• Forgetfulness

• Personality or mood changes

• Poor concentration and judgment

• Worsening of handwriting or loss of other small hand movements

Severe symptoms may include:

• Abnormal movements or shaking of hands or arms

• Agitation, excitement, or seizures (occur rarely)

• Disorientation

• Drowsiness or confusion

• Behavior or personality changes

• Slurred speech

• Slowed or sluggish movement

In hindsight, I could put a checkmark beside almost all of this, but it was so gradual in its onset that it was like the proverbial frog in boiling water. If I could go back with this information, we would have made a few different choices. Hindsight is always 20/20!