Waiting

Waiting.  I’ve done it for over a year and a half.  The waiting now is more of a psychological thing as my body slowly becomes stronger.  That's a more ongoing story.

In the year 2000, I was diagnosed with Primary Biliary Cirrhosis (PBC), an autoimmune disease which slowly destroys the liver's bile ducts.  It is believed to be hereditary.

In late 2010, the fatigue and cognitive symptoms of liver disease started interfering with my ability to effectively do the job I’d enjoyed for twelve years.  Not really "enjoyed".  But it was a good job, and I was good at it.  When it became evident to me that my accuracy had taken a dive, I applied for disability and left work on November 12, 2010.

For now, I won’t go into the ensuing health scares that arose shortly after that.  This is about waiting for the unknown.

One detail that’s important to the waiting game is what liver failure does to the anatomy.  When one has ESLD (end stage liver disease), the liver stops performing various functions.  The toxins produced by the digestive process are supposed to be cleansed by the liver.  When it's no longer able to do so, ammonia builds up in the cerebral cortex of the brain causing hepatic encephalopathy, otherwise known as "HE".  This begins early in the disease, and doesn't become noticeable until everything else has begun to fall apart.  It causes confusion, an altered level of consciousness, irritability, difficulties with coordination.

Wingman and I (and friends) had innumerable concerns about my behavior.  Learning about HE cleared up damn near everything.  It had taken away my ability to "pay attention".  The most common symptom of HE is a reversal of sleep rhythm.  I'd been trending toward a nocturnal pattern about the time I left my job, staying up and prowling the house at all hours.  I still have cognitive issues to a disturbing degree, but am told it will improve along with the rest of the recovery process.

There were some days of waiting which were joyously eventful, in that I felt strong enough to play in the flower beds.

I did some planting, but don’t recall what I planted nor where.  This growing season has yielded some of those results, such as Shasta daisies growing in a nice row against the front wall of the house.  Their appearance brought on vague memories of that lost summer.

I got down to 91 pounds and developed a skeletal appearance, which was alarming to Wingman.  Such an amazing caregiver he has been.  Kudos to him are forthcoming.

I sat outside much of the summer, taking many photos.  Woodpeckers visited and posed amiably.

Bees flew in slow motion for my camera.

Nature's beasts were cooperative with my need to record everything around me.

And I waited. The despair was getting to me, so I decided to do something humorous yet indicative of my state of mind.  I produced this self-portrait on Sept. 8, 2012.

The next day, on Sept. 9, I got THE call.  We had just gotten in the truck after a blood draw, and were headed out of the parking lot of the hospital for a dentist appointment.  My phone rang, and it was TS, the transplant coordinator.  She was all cool, and she was like, "Hi, what's up?".  And I go "Oh, not much.  Just on my way to the dentist, but my schedule is flexible."

I knew there could only be ONE reason for her to be calling me.  I was keenly aware that my last blood labs had produced a score that put me at the top of the transplant list.  TS suggested I go get a good breakfast, pack a bag, and come back at noon when they would have a bed waiting for me.  Organs were being harvested (nice word, don't you think), and if the liver was a good fit, my transplant was to take place in the morning.

So I waited - in my hospital room.

They came to get me at 3:00 am, and the wait was over.  The date was 9-10-11.

RAM