Rehabilitation 101

I passed VSRH on the way to campus every morning. Now I was on the inside, looking out the windows. Actually, I could only stare at the ceiling tiles above my bed.

The unit head nurses had bachelor’s degrees and were RN’s; other nurses with supervisory and shift responsibilities were RN’s and LPN’s. The nurse-technicians had various levels of education, from high school to college graduate. Many of the women were single parents; almost all of the women and men worked at more than one hospital and put in very long hours for low wages. My care providers were African-American, Anglo, Asian-American, Mexican-American, and Native American women and men, and we shared family stories at all times of the days and nights together.

Visitors came from campus between 3:30 and 5:00. p.m. Colleagues left me messages on my campus voice mail so that I could answer them during the quiet moments of the day. Pat came to visit every evening after work and stayed until 9:00.

The overnight nursing staff completed a second medication round in the early evening. I repeated the morning’s Heparin needle, blood pressure medications, stool softeners, and laxatives, adding a sleeping pill.  Patients turned out overhead lights by 10:00 p.m.. Televisions attached to extended arms could be kept on all night, at low volume, without disturbing one’s neighbor. I became a PBS junkie overnight, learning much about history, nature, and aesthetics during my hospital stay.

A Fact Sheet from Med Help International helped us to understand.

In Guillain-Barré Syndrome...the immune system starts to destroy the myelin sheath that surrounds the axons of many nerve cells, or even the axons themselves (axons are long, thin extensions of the nerve cells; they carry nerve signals). The myelin sheath surrounding the axon speeds up the transmission of nerve signals and allows the transmission of signals over long distances.... In diseases in which the nerve cells’ myelin sheaths are injured or degraded, the nerves cannot transmit signals efficiently. That is why the muscles begin to lose their ability to respond to the brain’s commands, commands that must be carried through the nerve network. The brain also receives fewer sensory signals from the rest of the body, resulting in inability to feel textures, heat, pain, and other sensations. Alternately, the brain may receive inappropriate signals that result in tingling, “crawling-skin,” or painful sensations. Because the signals to and from the arms and legs must travel the longest distances, they are most vulnerable to interruption. Muscle weakness and tingling sensations first appear in the hands and feet.

I worried that every new body sensation was a signal of things getting worse. I didn’t sound good when I talked. The muscles in my arms and legs grew weaker.

Every morning, my physical therapist, Kim, stretched the muscles in my legs and feet as part of range-of-motion exercises. When she lifted my legs approximately four inches off the bed, I howled in pain. Slowly, patiently, she brought the leg down slightly and continued the stretching regimen. Before lunch, Kim and Linda, my occupational therapist, lifted me to a sitting position at the edge of the bed, and together held me upright for ten minutes before I pleaded to lie back down. The pain up and down my spine was severe. They came every day to keep my muscles from deteriorating so that rehabilitation could begin once the neurological problems abated. It was the first time that the two of them had worked together on a patient’s case. They joked that it was the first time that they had worked with a professor.

Thursday June 19: Day 33

There is one case of Guillain-Barré Syndrome (GBS) for every 200,000 people in developed countries. Why was I the lucky one?

The acute period of GBS was supposed to end at twenty-eight days. Why wasn’t I getting better? I received the powerful medical treatments available—the immunoglobulin drip, then twelve grueling plasmapheresis procedures. In ninety-five out of one hundred cases, the patient gets better from just one of the treatment interventions. Five persons out of one hundred did not improve. I was not improving. Why couldn’t I be ordinary just this once? Why did I have to now be among the five out of one hundred already non-ordinary patients with a rare neurological disorder?

My arms were more paralyzed than before. My legs were immobile. My speech was deteriorating, and I had a hard time smiling or closing my lips. I kept thinking that the illness was spreading to my face, then throat, then lungs, and that the ventilator would be necessary very soon.

My neurologist, Mark Winograd, evaluated my condition as worse than two weeks before, when I was in the middle of the plasmapheresis treatments. He had to consider that my case may be chronic. My nephrologist, Mario Parise, also felt that I was slipping. The multiple treatments had only slowed the disease’s progress. Despite all of its negative side effects, they put me on 80 mg. of  steroids daily because I had not responded to the only other available treatments. They told Pat that they were afraid they were losing me and had no treatment alternatives left to try.

Sunday, June 29: Day 43

After six weeks of wrestling with this illness, no matter how hard I tried to talk myself into thinking otherwise, I could not relax, could not stop catastrophic thoughts, could not rationalize away the constant shortness of breath. That this syndrome is so damn idiosyncratic didn’t help. I never knew whether a day marked the beginning of some new constellation of symptoms that would leave me more debilitated and in serious danger, or just another normal variation of a serious hospitalization.

My biggest fear was being placed on a ventilator and losing my voice. I would lose my  ability to communicate. I would lose control over something that was my most developed skill and become dependent on a machine and those who monitor its functions to keep me alive. Today, six weeks into this disease, the fear of the ventilator overwhelmed me.

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