How treating my sudden death syndrome left me at risk of sudden death

In this week’s Patient Files, Michael Downing tells us about his harrowing set of medical encounters related to hypertrophic cardiomyopathy.

Michael Downing is a writer. He teaches creative writing at Tufts University.

He also inherited a medical condition called hypertrophic cardiomyopathy (HCM). It leads to a hardened and enlarged heart. For someone like Downing, who is in otherwise excellent cardiovascular health, the first symptom of HCM would be his sudden death.

“I wasn’t terrified [but] I wasn’t happy! It seemed like incredibly bad luck,” Downing says with a chuckle.

And so Downing elected to have a defibrillator the size of a stopwatch implanted in his chest. It’s called an ICD, and requires surgery to anchor the device to the heart and thread a wire through the vena cava. If Downing’s heart were to stop beating, the ICD would dispatch a sudden jolt of electricity and shock him back to life.

Almost two months post-op, Downing had a full-blown staph infection. He had acquired it in the hospital during his surgery. He was rushed into the emergency room because his physicians thought he only had a couple of hours to live.

Downing – who appreciates the irony of the situation – says, “This device that had been given to me to prevent my sudden death was about to cause my sudden death, and had to be removed.”

His ICD was taken out successfully via an explant (opposite of implant) operation. The doctors had saved his life. But they’d also left him at risk of sudden death again.

This was not the end of the surgeries. Over the next couple of years, Downing would undergo additional implant and explant surgeries, causing increasing amounts of damage to his vena cava. The ICD he has now, though, seems to be working just fine.

But these days, after vigorous exercise or a hot shower, Downing says it takes longer for the blood to drain from his head because the size of his vena cava has been reduced due to the scar tissue.

The only solution, he says with a smile, would be to remove his ICD.