Caregiver to Caregiver

This is the second part of a series that began with I’ve looked at caregiving from both sides now.

Soon I was transferred to an examining room where the poking and prodding began. (If you discern that I did not consider this to be a pleasant experience, you are correct.)

My blood pressure was out of whack (197/103) and dropped by about 30 points when I stood up (orthostatic hypotension). The triage nurse made three (painful) attempts to draw blood before calling for the phlebotomist to perform the venipuncture. She succeeded, painlessly, on the first try. The lab report was “perfectly normal.”

Walking to the in-room toilet was a gigantic effort. The strange sensations in my fingers had intensified. The hospital gown felt like a sponge. It was a relief to see the cheerful emergency department doctor until he diagnosed me as “dehydrated” and informed me I would be able to go home after administration of some fluids via IV. My first thought was “I hope they send the phlebotomist to start the IV,” but then the reality of the doctor’s words hit me. Dehydrated? Go home?

Gingerly, I proposed the possibility of another diagnosis – maybe Lyme disease or Guillain–Barré syndrome. Without further ado, the doctor curtly dismissed this suggestion.

Randy and I shared a questioning glance before my husband dutifully spoke up. “But she can’t even walk…what are we suppose to do?”

This question appeared to annoy the doctor who shot back, “Okay, then. We’ll do a CT scan.”

At that point I remember thinking, “Whatever this turns out to be, it’s going to be expensive.” Immediately, I scolded myself and determined not to think about the cost of care again until I recovered (from whatever this was) and was back home.

The proficient tech that accompanied me for the CT scan was an example of what health care workers should be: concerned, compassionate, and competent.

When she returned me to the ED, I requested (the ED nurse may have considered that I insisted) that the phlebotomist start the IV. She did so skillfully. After the first bag of saline was administered, I attempted to stand but had no muscle strength or coordination. I slumped in a blob on the floor. It had been about four hours since we arrived at the hospital and my condition was deteriorating.

The admitting doctor walked in, introduced herself and informed me that my CT-scan was normal. The process of ruling out “everything else” had begun. I was unaware that Hoyt, my physician-assistant son-in-law, had just sent a text message to my daughter Rachel, asking for an update on my situation. Hoyt also mentioned that the possibility of GBS had crossed his mind. Even though the first doctor had pooh-poohed that idea, Rachel thought it was worth mentioning again. This time, the doctor seemed to give GBS a wee bit of consideration, but remarked something to the effect that, “It is very, very rare.”

When GBS was later diagnosed, I tried to be generous with my evaluation of how the diagnostic process had been handled. Yes, GBS is rare: one or two cases per 100,000 people every year. But when I eventually returned home and was emotionally ready to research GBS, Wikipedia’s first paragraph on this subject read:

The initial symptoms are typically changes in sensation  or pain along with muscle weakness, beginning in the feet and hands.  This often spreads to the arms and upper body, with both sides being involved. The symptoms develop over hours  to a few weeks…some are affected by changes in the function of the autonomic nervous system, which can lead to dangerous abnormalities in heart rate and blood pressure.

 And from the second paragraph: The cause is unknown. The underlying mechanism involves an autoimmune disorder in which the body’s immune system mistakenly attacks the peripheral nerves and damages their myelin insulation. Sometimes this immune dysfunction is triggered by an infection  or, less commonly by surgery and rarely by vaccination.

In the above paragraphs, I underlined the symptoms or signs that I reported or that were revealed in the ED. If only I had described my fingers as “having a change in sensation” rather than “feeling squishy,” maybe the doctors would have had greater diagnostic ammunition. Wikipedia does note that a diagnosis of GBS is usually made based on signs and symptoms, through the exclusion of alternative causes, and supported by tests such as nerve conduction studies and examination of the cerebrospinal fluid.

Those tests were to come later. But first, the admitting doctor concluded I should not be sent home but admitted to the hospital. The next 24 hours were distressing for both my family and me as my symptoms grew wore. There were no further attempts to diagnose, and therefore, no treatment was available. I began to think I was dying.

The next installment of this four-part series, which I have entitled, This is not a comedy show! will be available on 11-05-18.