I started writing this post three weeks ago, when I was easing back into training again post-heart procedure. I thought I’d explain what had happened, because I thought I was already past the worse of things and reading some of what Sam Warriner and Amanda Lovato and Erin Densham had gone through for the same diagnosis and procedure had helped me.
But then things got a lot worse and I didn’t really feel like explaining it and I didn’t have a way to finish that original post, and now it’s been long enough I don’t really want to answer the same questions again and again, actually I don’t really want to talk about it at all, so I’ve sort of just been ignoring everything. But then I end up just answering the same questions again and again one at a time.
So, here, this is my explanation. I’m only making it once. I am not taking opinions, advice or thoughts.
Since I was a kid, I’ve had periodic episodes. I would feel my heart rate skyrocket, thump through my body and I’d get lightheaded. I used to pass out when this happened, and it turned out when I passed out I would convulse sometimes. We went through lots of thoughts and lots (and lots) of tests. But every test was always completely clean and normal. I was 100% healthy, except for these infrequent and random episodes. There was always then some specific explanation: I was probably just dehydrated or high-strung or had overdone it or it was too hot or too cold or too much altitude. There were incorrect semi-diagnoses along the way. Doctors were almost convinced I was imagining it. A good portion of my adolescence was spent with people thinking I had epilepsy. Which I definitely do not.
Yet, I kept having the episodes — so rarely they were never captured: once per year, once every few years, so long would pass sometimes that we’d basically forget about it. It became manageable. Six or seven years ago, the last time I actually passed out, a UCSF specialist gave me a whole bunch of studies about how to manage the passing out. And things were fine.
This diagnosis: SVT
That was until the really bad episode in Australia last year. The one that finally happened while I was wearing a heart rate monitor, so I could say: See, I am not making this up.
I ended up with a recommendation to see *the* heart guy at Stanford. We got all my files, re-did lots of the tests we’d done before plus some new ones, and established that what I most likely had was a type of arrhythmia called a Supraventricular Tachycardia. Essentially, as far as I understand it, a node in my heart sometimes electrically misfires and gets stuck in a fast rhythm. It’s not inherently dangerous. But because the episodes are so infrequent, we could never capture one on an EKG, so we couldn’t be sure. In fact you might never know you had an issue; you might just feel sort of bad for a little bit one day. It’s not related to exercise in any way, but it’s likely that if you never really pushed yourself, you might not ever even notice. Maybe.
On Nov. 6, I had an EP Study done to confirm what was wrong with my heart and a partial ablation to try to fix it. They went up the veins in my groin to shock my heart. I was awake and strapped to a table while it happened — for over six hours. It sucked. But we came out of it having finally triggered an arrhythmia episode, which showed a relatively simple SVT issue and which they tried to ablate in the node it came from (but weren’t entirely successful; it sucked). All in all, though: it was considered a successful procedure. I stayed on more-or-less bed rest for a week, then eased back into very easy activity, and then I was cleared for light workouts. I might still have the rare episode, but since they were so infrequent and we established they were benign, no problem. Right?
Now I am officially a medical mystery. I could be on an episode of House. Two weeks after the procedure I started to have some minor episodes, then I had more, frequently, many within a day. They stuck one of those fancy heart rate monitors back on me so they could see what was happening. But the doctor was puzzled. It’s common to have some issues post-ablation, but not generally a period of nothing and then lots of issues. It sucks.
Now he’s even more puzzled. The fancy monitor showed a new kind of problematic heart rhythm they hadn’t seen before. It’s probably always been there, but just had never been captured. It’s probably what I’ve always been feeling when I had an episode, when the heart felt like it was thumping and jumping inconsistently. They probably just thought when they triggered the one SVT rhythm during the EP Study that that was all there was. But it wasn’t. Turns out I have all kinds of things going on in there. And part of me is like: SEE, I FUCKING SAID.
And now, now, we don’t know why these episodes are happening more, like lots more, right now. We know there have always been triggers for episodes and something is triggering this to be worse now. Odds are it was the ablation, inflammation from the procedure, but the doctor is even more puzzled about that, because there wasn’t anything they did physically that could cause this to happen. Still, hell of a coincidence.
So, right now, we hope *fingers crossed* that the trigger for these episodes was the ablation and procedure, and everything will just calm down eventually and go back to semi-normal. They’re doing more tests in the meantime and my blood got stuck in some database studies storing interesting genetic material for research, because apparently now I’m interesting. And a genetic counselor tried to emotionally counsel me, but I really didn’t know what exactly I was supposed to say besides: of course this sucks.
It all sucks. Physically, it literally sucks when one of these happens. And it sucks that they don’t know why it sucks. It sucks that I feel like I fucked up by doing the procedure when everything was fine before. It sucks that I can’t really train, there’s no real point, and I can’t make plans. And it sucks that everyone wants to say inane shit to me like “Well, just take it easy you know” or “You probably shouldn’t push yourself so hard, lots of athletes have heart issues” as if I trained myself into a genetic problem I’ve apparently had my whole life, as if this is the same as the athlete’s heart dangers (because it’s not), as if random people have any idea what they’re talking about.
Anyway, it all sucks. And this is mostly why I’ve been pissed and tired and sick of everyone and I thought I should tell people, so here’s me saying all I’m going to say and that’s that.