Blog by Jamie Poole
For the first time in 12 years, I experienced my first incident of an inappropriate shock. Not just one, but five, one after the other.
To say it was painful would be a gross understatement. It was a combination of the most painful experience of my life, mixed with the most terrifying. Not only was it the first time I had inappropriate shocks, it was the first time I had multiple shocks in a row.
And the thing is, I didn’t know they were inappropriate at the time (nor am I convinced they were, but I’ll get to that). In my mind, I was dying. As far as I knew, I was going into cardiac arrest again and my ICD was doing its best effort to keep my heart beating. The fact that it shocked me multiple times not only added to the pain I was experiencing — but with each shock it exponentially made it more terrifying. Why wasn’t it working? Why didn’t my heart return to normal after the first shock? Why not after the second? The third? The fourth?
As each shock jolted my shoulder forward, my thoughts quickly entertained the idea that something was even more wrong than “normal”. That this time may be the last time, for good.
So why is it not a relief that I wasn’t going into cardiac arrest? I wasn’t dying, it was an “accident”, a unfortunate possible side effect of having an ICD, just a bug in the code that they can’t fix. Why doesn’t that make it feel any better?
Well for one, I’m still not entirely convinced it was inappropriate.
See, I’ve had 9 appropriate cardiac arrests now. I like to consider myself somewhat a “pro” at “dying”. I know the feeling my body goes through, I know the timeframes before my ICD will attempt to treat an arrhythmia, and I know that calming myself down does not prevent me from going into cardiac arrest. The experiences from those 9 cardiac arrests have literally dictated how I live my life, I have avoided that feeling for 4 years by listening to my body (a little too much sometimes). I know what my body “sounds” like before an arrhythmia, I know my heart’s limits, and I stop myself from reaching that limit to avoid potential death. Simple.
So with that decade of experience in mind — I was frustrated when the Cardiology team paid so little credit to the fact that I felt these exact feelings the minutes before I was shocked “inappropriately”. I’m not a “noob” at this, this is almost a regular Wednesday at this point, and I knew that my heart rate was accelerating and I wasn’t in the driver seat anymore. While it may look like a normal ST rhythm on an ECG, I somehow knew a shock was coming. After my last cardiac arrest, the nurse responsible for monitoring the ECG summed it up perfectly when she said to another Doctor, “It’s weird, he knew it was coming before the ECG picked anything up”. If it was inappropriate, how did I know it was coming?
While the fact is the read-out showed a steady incline that appeared to be ST, I had stopped all activity before it shocked me. I was literally waiting for it, standing in the doorway to my room. While the Cardiology team explain the inappropriateness away as “during mild-exercise”, I wasn’t. I wasn’t half-way through making my bed and “Bang it shocked me”. No, I felt my heart rate accelerate, I stopped, and stood still for a couple of minutes, as I always do. Again, while it may look like ST on paper — when it did not decelerate when I stopped, warning bells rang in my head.
But what do I know. I don’t know the ins and outs of Cardiology and I don’t know exactly how much information my ICD gives Doctors post-events. Any reasonable person would have to trust the judgement of Cardiologists and Electro-Physiologists who looked at my case that night. They are the experts at this, and I am obviously not the first patient they’ve had with inappropriate shocks.
Which leads to the first of two reasons why it’s scarier not to die. Read the full story here.