From the Heart: One Year Later

Real World Note: The current world events are so upsetting and yet I feel so far removed from them. My heart goes out to anyone impacted by the violence and I just hope things will calm down SOON. I will keep looking to my favorite news sources (NPR Up First, Pantsuit Politics, Ezra Klein) to understand things better.

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3.2.2025

One year ago (well, plus one day) this happened.

(To briefly summarize for anyone new since then, I ran a half marathon — something I had done countless times before — and ended up in sustained Ventricular Tachycardia after the race with a heart rate of 265. Something felt like it went wrong during the the last ~20 minutes of the race, and after barely making it to the finish I headed to the medical tent. As it turns out, I was having a very dangerous arrhythmia and I had to be emergently transported to the local hospital and ended up getting shocked out of it. Despite very low blood pressure – think 60s/30s – I remained awake for all of it and still remember it very vividly up until I was sedated for the actual shock. I can remember the ambulance ride, saying goodbye to the kids and telling Josh to take care of them, what the adenosine felt like when it didn’t work, and my clothes being ripped off of me while the team tried to put in like 5 IVs at once.)

Okay maybe that less ‘summarized’ than I had planned.

It was a day I will never forget.

And then, after that day came a week of uncertainty. WHY did this happen? WHAT did it mean that my heart didn’t look normal on imaging? WHY did I keep having PVCs every few beats? WHAT needed to be done about it all?

I ended up getting a defibrillator (S-ICD) implanted in the hospital, and I actually ended up getting my tentative diagnosis VERY quickly — in my 5 year journal on 3/4/25 I wrote: “Dr. Klein the fellow mentions ARVC. I had never heard of it.”

(Not saying they didn’t TEACH me about it in med school but I definitely did not retain it if they did.)

Fast forward to multiple reads of my MRI and a trip to Johns Hopkins and I was formally diagnosed with Arrhythmogenic Cardiomyopathy. THANKFULLY I have ‘the best kind’ (gene-elusive) and had no indicators of heart failure (which some people progress to). It took a number of months and trial and error, but I ended up on a medication that controls my day to day rhythms really well (flecainide for the win!) and life is in many ways back to normal.

THE MAIN DIFFERENCES:

• I can’t run. Or at least, I know I should not run. Endurance exercise can increase risk of arrhythmias (short term) AND can make the cardiomyopathy (areas of scarring in the heart) worse over the long term. Given these risks, and the fact that there are plenty of other things one can do to remain healthy, there is just no way I can justify running, and my cardiologist advised not to do it. I mean, let’s say I DID end up in heart failure in 10 years — how could I look back and say it was worth it? Yeah.

(Do I like, run to get out of a rainstorm sometimes for 1 minute? Yes. Probably okay. This refers to sustained endurance activities.)

Thankfully I can still do other things including walking, Pilates, and strength training. Sometimes I do wonder about the load on my heart with lower body workouts that have longer periods at higher HRs, but there really isn’t much guidance in the literature (and in fact there IS emerging data about strength training in general being okay!).

• I don’t feel that confident about my long term health. Yes, I might be fine for decades! And in fact that is reasonably likely especially since I do not have an associated gene. But I also . . . might not. I am part of a Facebook group for ARVC which is in some way helpful, but in other ways a little scary as I’ve seen people with gene-elusive disease end up with heart transplants. (MOST PEOPLE do not progress like that! But of course you remember the worst case scenario). I guess I feel like my inner sense of whether I would make it to 90 went from “yes, obviously not guaranteed, but seems pretty likely!” to “probably? maybe?”. There is just more uncertainty there compared to what was there before. I know I am not unique in this — I am sure that tons of you reading this with other chronic diagnoses can relate.

• In certain circumstances I get reminded that my heart is not normal and I just hate it. I had like a palpitation festival when we got to Big Sky last year. I had (well — I think, didn’t get a tracing but I felt it and my watch showed a rate of 193) a self-limited run of VT on the mountain. I had slow VT the day after my colonoscopy. I now know what all of this feels like and will quickly go to my watch to verify and sit there panicking until I see the complexes get narrow again — back into sinus rhythm. I hate all of this.

(DID I HAVE ALL THIS before and not know about it? I know I have had a very high number of PVCs/skipped beats for years — in 2017 my PCP ordered an echo that I never did becuase I got pregnant and totally forgot about it. I also believe I had undiagnosed sustained VT after a half marathon in January 2020 (I even wrote about the symptoms in this post). I can recall short periods of dizziness/etc at other times, but never anything that lasted long enough to really dwell on it.)

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I’ve written a lot of facts above.

I am good at facts, and explaining, and solutions, and plans. I am not always as good at feelings.

They exist in a duality:

#1 — I am so lucky. To be alive. To have things caught when they did. To have been diagnosed so quickly (well . . . though 5 years earlier might have been better, I guess). To have been able to see the most expert group in the world to confirm my diagnosis (and to have multiple blog readers there reach out and even offer to meet with me!!). To have gotten to enjoy running (and I ENJOYED THE HELL OUT OF IT) for the time I did. To have the gene-elusive version (so lower risk for me, and even more importantly, very LOW risk for the kids!). To not live with daily pain. To be able to do so much still (strength, Pilates, walking, skiing — really basically anything else!).

#2 — THIS EFFING SUCKS. I’m in my 40s, not my 80s. I’ve been active my entire life and get rewarded with this!? I have to watch friends and loved ones continue to enjoy running (and I can SEE how important running is to them, as it was to me). I have to worry about VT on the mountain in Montana. I have to sleep on my right side because the defibrillator is hard and uncomfortable (and I am self-conscious about what it looks like, even though I know you all have reassured me it’s not noticeable). I can’t wear normal bras anymore. I have to take a med (and when I forget, my heart lets me know about it). I can’t have an extra cappuccino (well I can, but it better be at least 2/3 decaf). I have to get periodic rhythm checks and echos done. I have to have some doubt about whether my heart will last as long as the rest of me.

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So. I guess this all sums it up — it’s a complicated, mixed, emotional picture. And I still struggle sometimes, especially when I am in the throes of PMS I’m so much more #2 vs #1. But mostly I just take it one day at a time and appreciate all the amazing things life has to offer, things you don’t need to use any cardio endurance for.

Being with family, including the longest snuggles and hugs. Laughing with friends. Taking trips to exciting places (and revisiting comfortable old favorites too). Doing meaningful work both in the clinic and in the podcasting/planning sphere. Eating dark chocolate or Haagen Dazs. Enjoying fresh air on a walk and listening to great music. Sleeping in on a day I would have had to cram in a long run before the heat 🙂

It has been a lot, and it has been okay, and I’m mostly just glad to be here.

(But I probably still don’t want to hear about your amazing marathon. Maybe I’ll get there eventually!)