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.
Reason number 1 why “It’s Scarier Not to Die”.
For 12 years, I was gaining quite alot of confidence in my ability to pick up these changes in my body and stop myself before they escalated into anything serious. I have now gone through my longest period of “not dying”. My last cardiac arrest was in May 2017 and I attribute that to my strict adherence to what I thought my body was telling me. If I was so wrong this time, if despite what I heard my body say it was still only inappropriate, can I trust any of my experiences so far? Are those “warning signs” real, or have I just been correlating mixed feelings to an event that are actually unrelated?
In this respect, I almost wish I did “die”. I wish it was a cardiac arrest, then at least I know that my brains defences worked and picked up the feeling before it happened, although I didn’t stop it, I would at least know that my “system” still works. Now I don’t know if it does anymore.
And this has hit me hard. For the last three weeks since the shocks, I have not been able to trust any of my bodies feelings. I can’t bend over, I can’t pick things up, I can’t brush my teeth, I can’t take the trash out. The moment my body feels different, I have lost all confidence that I am able to determine what is an “okay signal” from my heart versus one that might lead to me getting shocked.
My usual way of dealing with the aftermath of a cardiac arrest has been completely thrown out-of-whack, and I don’t know how to get back to normal.
Reason number 2 why it’s “Scarier Not to Die”
A nurse once told me as she pushed me out of hospital in a wheelchair after one of my cardiac arrest, “you know it’s not going to work everytime right?”. I’ve always known ICD’s aren’t perfect. They fail, they make mistakes, and they can misread the situation. My ICD made that painfully clear.
I’m not going to pretend I pushed the limits of my ICD’s tolerance of its designated monitor and “shock” zone. It was previously set to shock at 158bpm, and yet I don’t think I ever raised my heart rate over 100bpm (until apparently this night) in the 4 years since my last cardiac arrest. But assuming this was an “inappropriate” shock, this event reminded me that even when everything is apparently going fine, I still might have to experience the pain of acute electrocution again.
Now that I know for sure my device could shock me inappropriately, how am I supposed to let me heart rate accelerate ever again? If I was cautious before, I’m about to become extremely involved in the decision process for every movement I make.
A cardiac arrest is almost a relief in a way — “Hey, it wasn’t your fault. You have Hypertrophic Cardiomyopathy and you went into an arrhythmia. There’s nothing you could have done to prevent it”. There is solace knowing that even if I try my best, whether or not I go into an arrhythmia is largely out of my control. It’s going to happen whether I want it to or not.
An inappropriate shock is different, it was in my control. It was my “fault” I got shocked. It was my “fault” I just experienced the most painful and terrifying experience in my life. I should have stopped myself. I should have known better. I should have prevented putting myself in a situation that would lead to a shock.
And so if my ignorance, forgetfulness, or complacency can lead to a shock — how am I ever supposed to play it cool now? That has literally been how I deal emotionally with my cardiac arrests in the past. I ignore it, I do my best to forget it ever happened, and I move on like nothing changed. I can’t do that now. I now need to emotionally deal with this issue. And that’s something I’m not prepared for.
I am in uncharted waters right now. In alot of ways, I just had my “first” shock all over again. I am not prepared mentally or physically to deal with this new “threat”. I don’t know what to do.
As any of you that have known me, or perhaps seen me on social media or publicly, my reaction thus far has been to laugh it off, to treat it as a joke, to lock away the memories and feelings in a box down the deepest parts of my brain and throw away the key. It’s a strategy that seems to have worked, and has allowed me to travel, to play, and to experience things otherwise not advised of a heart failure patient. I’ve had a great time dealing with it this way. But I don’t know if I can do that anymore.
Things will need to change, and that’s scary.