Friday, March 4, 2016

SfMCR: Struggling to breathe because of my trach

At least my dexterity had improved enough for me to suction the plugs from my mouth myself.
After all of the dramas I had suffered in my struggle to speak, you would think I had finally come to the end of my speech travails when Keith bought me a replacement for the talking and eating valve--aka Passy-Muir valve--which had been carelessly thrown away with my used trach.

You would be wrong.

Within a week or so after the replacement speaking valve was put in, I came down with pneumonia. Not just any pneumonia, but the dreaded MRSA--Methicillin-resistant Staphylococcus aureus. That meant that I was Typhoid Stephanie. All visitors had to dawn sterile gowns and masks before seeing me.

Even worse, I was barred from the "gym," as the physical therapy room was called. I had no access to the exercise equipment that would help strengthen my coma-weakened muscles. The PTs went
The balloon was there for my physical therapy.
into my room to give me the limited therapy they could provide there. I had to leave the nursing home at the end of the next month or lose my Kaiser coverage, and I still couldn't walk.

The clock was ticking. But that was far from all.

The phlegm from the pneumonia was forming into thick plugs, which clogged my breathing tube. Trachs make it harder for you to cough up phlegm.Thus, it was actually impairing my ability to breathe. The irony is that it was becoming increasingly clear that I didn't need the trach anymore (a fact Ricardo admitted when he finally removed my trach a month later).

Joseph, a big, bald-pated Jamaican respiratory therapist explained in his sing-song Caribbean lilt, "It's your your speaking valve, my dear. The valve dries out the mucus, making it form into plugs."*

But I wasn't about to give up my hard-won ability to talk.

I had already grown to trust Joseph, who prided himself on how many patients he had talked through breathing crises. Being a skeptic, I initially doubted his self-assessment until I saw it for myself (and with myself). He calmly talked me through more than one such crisis, as he did with Vilma, the fellow coma survivor I shared my room with.

One day, the plugs just wouldn't stop coming. Some of them were huge, clogging the suction tube so badly that Joseph had to open it up to remove the plugs with saline and swabs. (Um, maybe I should've warned you that this post isn't for the squeamish. Sorry!) They were tinged brown because my trach had be suctioned so frequently that my throat had become irritated. (I know, blech. Sorry again!)

And speaking of irritation, Joseph spent his entire shift shuttling back to my bed to suction me yet again. All day, I continually hacked as deeply as I could to bring up the plugs. Sometimes they would shoot out of my mouth like spitballs. We should've set up targets.

As much as I could, I tried to clear them myself by coughing and by suctioning my mouth and upper throat with a long plastic wand (see above photo). I hated having my trach suctioned because it was uncomfortable and little scary--it felt like the RT was sucking my breath away. It was a bit like being waterboarded, actually, though the only thing they're trying to extract from me was phlegm.

Joseph was reluctant to suction the trach too often because of the increasing throat abrasion. He therefore encouraged me to cough them up myself when I could. My chest was beginning to feel like my ribs were boring their way through the skin. I was physically spent, yet every time I started to have trouble breathing, I had no choice but to begin hocking yet again.

At one point, even suctioning couldn't seem to clear my trach. I coughed and I coughed and I coughed some more until I was hyperventilating so much even the ventilator couldn't keep up. What's worse, since my awakening I had been plagued with frequent bouts of painful chest spasms, which coughing often triggered.Whenever my chest spasmed, my hyperventilation worsened.

Now I was scared. And the more nervous I got, the worse the hyperventilation became. Joseph had told me of a heartbreaking case in which he couldn't calm a panicked patient, who eventually died.

I wasn't panicking...yet. Still, the story was meant to illustrate the very real dangers of a breathing crisis.

But Joseph's soothing manner relaxed me. I focused on imagining a particularly peaceful scene with Keith at an ancient Greek ruin Sicily. As I calmed down, my breathing became more regular. With a several forceful coughs, I expelled the plug restricting my airway.

At the end of the day, with my last bit of physical reserves spent, I gave in and allowed them to remove my speaking valve before I went to bed.

But that still wasn't the end....

*The Passy-Muir people tell me that the plug problem could've been solved if the nursing home had only humidified the ventilator air. That makes sense. I'll get into that subject in my next installment of this SfMCR series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

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Coma Girl

Coma Girl

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.