Friday, February 26, 2016

SfMCR: My voice, trashed


It was a triumph when the nursing home speech therapist finally approved a talking and eating valve for me, also known as a Passy-Muir valve.

But less than a week after I started using the voice-giving valve, it was literally snatched away from me.

Every night in the nursing home, I was awoken for a blood test or to check my trach. One night, a respiratory therapist woke me up to change my trach, Afterwards, I went back to sleep. But when I awoke in the morning and tried to say something, I could barely make a croak.

I took a drink of apple juice and tried again.

Nothing.

Maybe it was congestion? I summoned Ricardo using the call button. When he arrived, I gasped out a request for a breathing treatment.

Afterward, I tried to cough up as much phlegm as I could.

Still, no sound came out beyond what I could eke out before I received the valve. I took another drink. Nada. So I pressed the call button.

"What is it again?" asked Ricardo.

"I can't talk," I told him.

He unhooked the tube leading into my trach. "Your speaking valve is missing! What happened?"

I shrugged. Then I remembered, "Last night someone...woke me up to...change my trach." I was doing my best to take breaths between words, but as usual, I wound up trying to say too much between breaths.

We immediately realized what had undoubtedly happened. The valve had been tossed into the trash with my old trach.

"Who did this?" Ricardo said, clearly pissed.

I shrugged as I shook my head, instinctively returning to the mime I had perfected when I could barely speak.

At first I hoped it might be possible to retrieve the valve, but it soon became clear that this was impossible.

My hard-won valve was now medical waste.

"Do you know how expensive those valves are?!" the incensed Ricardo exclaimed. "I'm going to find out who did this to you. This shouldn't have happened. Carelessness like this is unacceptable!" Ricardo was a pretty even-tempered person, and this was about as close to raging as he got.

"When can I get a new o...?"

"I'll have to check. We don't normally keep many of these in stock."

As it turned out, they didn't have another valve. When I asked the next day, Ricardo told me they were ordering a new one.

The next week, he said they had ordered it, but it hadn't arrived yet. The week after that, he said he would check into what the hold-up was.

Each day, the first time I saw Ricardo in the morning, I would ask him about the valve.

"I'm sorry, it's still not here," he would tell me after he had checked the storeroom.

Eventually, Keith found a company that sold Passy-Muir valves on Amazon. He paid for it out of his own pocket, including the rush shipping.

Finally, I had my voice back...again.

It wasn't long, however, before my valve was threatened yet again.

Here are the previous installments in this Scenes from My Coma Recovery series: Part One; Part Two; and a related SfMCR: Gaining the power of the pen.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.