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.
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.)
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.
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!)
44 Comments
Sarah, the way you have navigated this with grace, power, and humor(!) is so admirable. I’m sorry this happened to you. I’m sorry because it does suck, and I’m grateful you’re alive. Two things can be true and holding them together is one of the more difficult things in life. You’ve done it so well this year. We are rooting for you!
thank you!!!
I can’t believe it’s been a year. I hate that this happened to you and that your running had to be stripped away. I know how much that hurts you! But I’m so glad that you’re ALIVE and that in spite of this all, you’ve managed to have an incredible past year in most other ways. So, so proud of your resilience and determination to make the best of a bad thing and find ways to keep on living to the fullest! 💕
YESS and you have been a part of helping me through all of it so thank you!!!!!!
As a friend watching from the outside, what I see isn’t someone defined by a diagnosis. I see someone who faced something terrifying, adapted with clarity and strength, and continues to build a full life around new boundaries. It’s definitely not the health life you planned (and it makes sense to mourn/be sad about that) but it’s still very much a big, vibrant life.
I wish this wasn’t your story, but you have handled it bravely and thanks for sharing about it in this space; I can guarantee you’ve encouraged other people walking a similar journey.
Hugs <3
thank you Elisabeth – it means a lot!!
Thanks Sarah for sharing your anniversary thought on this. I can’t imagine not running but I can imagining giving up anything to live. The change of mindset is probably the key to happiness in life in general and you’ve done just that. It’s also human to be frustrated at the time too. I’m confident that you’ll find joy in other activities, gradually replacing the running.
well – I probably couldn’t imagine it either, but I almost wish I HAD imagined it – bc you never know! Definitely feel like there isn’t one replacement as of now, but it’s been okay even so. (And at least pilates is something 🙂 )
Oh Sarah. Yes, so lucky to be alive, grateful for every moment, etc., but wow does that suck. It sucks on so many levels – the fear, the worries about longevity, quality of life – but also a big part of you was taken away. Running was so important and a big piece of your life and it is now gone. It’s one thing if you choose to stop an activity, it’s another thing altogether to be forced to stop. I’m sorry this happened to you and I’m sorry it has impacted your life to such an extent. I will say I am very impressed with the grace in which you’ve pivoted and embraced #1, while still acknowledging #2.
thank you Nicole!!
“I don’t feel that confident about my long term health.” – Yep.
And at the same time, “I am so lucky.” – Also, Yep.
The partner of someone I know passed away at 41 from a cardiac arrest that occurred while they were in bed sleeping two weeks ago. As far as I know they had no risk factors either. You are lucky AF.
I really admire the way you are being mindful about enjoying what you do still have — which is quite a lot! The sobering reality is that something like this will happen to the vast majority of us sooner or later. You’re still young though, and with the exception of running, you can still do all the things you enjoy and continue to achieve success in multiple life domains.
“But I probably still don’t want to hear about your amazing marathon.” – LOL thank you for stating out loud what we all feel from time to time about things we cannot have that we want. 🙂
haha yes – I could pretend to be “oh, I don’t mind” but the truth is . . yeah, not there yet!!! And I know you have had a really hard year health wise too so you absolutely get the “this sucks/i’m lucky” dichotomy. That is so sad about your friend’s partner.
Well… you know I feel this deep in my soul. I love running so, so much and the thought of anyone wanting to do it and not being able to, is painful. BUT. Every time I think about that, I think about your experience at that race, and afterwards in the ambulance, and how you really, really thought you were dying… and that puts it all in perspective. Running is just one thing- luckily you’re able to continue to do ALL THE OTHER THINGS in your life that you love. I know that on a good day, that’s your primary thought. I can picture the bad days as well (WTF?? Why did this happen to me???) Also, the fears about your longterm health. But you know we’re on the same page about this- none of us know how long we’ve got left. The days are limited for all of us, and we just have to make EVERY DAY COUNT : )
Thanks for sharing your story!
SHU was in unstable VT. She was literally dying. I think this is what you meant, but I just wanted to clarify. 🙂
YESSS TO Every Day Counts. I’m not getting a tattoo but IF I DID that phrase would be a contender. (not doing it though, hahaha)
I hate that this is your reality. It is very hard when a choice is made for you that you’d never make for yourself. And you did all the right things before this life-changing event happened. I really admire how well you’ve handled everything, though. You did not wallow nearly as long as I feel like I would have. I mean, I went through something that was scary (also had an ambulance ride where my clothes were cut off) but it was not life-threatening and I’m STILL in therapy dealing with the aftermath/triggers/etc. I wouldn’t say I am wallowing, but it has impacted my life in a pretty profound way.
I am glad that you were dx’d fairly quickly and have found a med that is working. But it still really sucks to need to take a med every day and have an implanted device. I’m glad you are working with an amazing team at John Hopkins.
we definitely all process things differently and no two traumatic experiences are the same! Sending hugs and I hope for your continued healing, too.
I just want to say, Lisa, that it’s okay to still be processing what happened to you. These things take the time that they need to take.
You are so lucky and it does REALLY suck – it’s all valid to feel. I feel that same way after having breast cancer twice in my 40s. It’s always in the back of my head if it will come back. My body has tons of major scars and some ongoing pain and I’m missing body parts because of my surgeries. Of course I’m glad that it was caught early and my long-term prognosis is good, but it’s tough sometimes that I’m reminded of it every time I see myself. Sending so much love and hugs to you, Sarah.
oh wow Megan – that is a LOT LOT LOT and definitely has parallels. I’m so glad overall the long term prognosis is good, AND I get the struggle with the reminders . Sending love and hugs back!!
I’ve always been so full of admiration for you, and this has only strengthened in the last year. What a harrowing event and I cannot even imagine how you were processing it as it was happening and the aftermath. I’m so sorry this happened and that it took away a thing that has centered and grounded you for so long. Your honesty about your very real and valid feelings about it is refreshing in a sea of ‘all positivity’ all the time-and empowering to so many people who have gone through events and also have such feelings of loss and grief mixed with gratitude. But even through all of it, you’re focusing on making strides to reframe on the things you do feel joy in and are lucky to have-again, so admirable. Thank you for always being so refreshingly human-and for inviting us to be a part of your community.
PS: If they taught us what ARVC was in medical school, I forgot too. I don’t even think I came across it in residency, and I went to a Cards heavy program where a discussion on cellulitis could turn into the finer points of Afib. (Still hate Cardiology)
admittedly . . . I didn’t really like cardiology either! My poor grasp of anatomy was always an issue. And THANK YOU!!!
I am so sorry that this is the situation you’re in, but so thankful you are okay and grateful for how you’ve processed this on the blog for all of us. I also loved to run but had to stop last summer (more than likely for good) due to health issues. While my issues are not as serious as yours, I definitely understand the sadness of not being able to do something you love to do. It makes me a little sad each time I walk past someone out running. It is just a bummer. Your posts about all this have been a help to me as I process so thank you. Wishing you all the best healthwise and otherwise.
(Also, I know you are a former peloton-er and one thing I remind myself of is something one of my favorite instructors, Camila, said regarding injuries/ health issues….if you make a list of the things you CAN do and the things you can’t do, the CAN list is a lot longer…so try to live in gratitude of the cans. You certainly seem to do that well!!)
not even a former Pelotoner- I still enjoy the yoga pilates and strength (though doing more Caroline Girvan for tha lately). 🙂 And that is so true as to what Camila said. And you have every right to be sad too no matter what the cause of your limitations are.
You’ve done a beautiful job of summing up both the facts and the emotions–and sharing that with all of us can’t be easy sometimes. I’m so grateful and glad you’re still here, selfishly, because you inspire me and brighten my life. I KNOW your family and IRL friends feel the same. It sucks, but you’re lucky, too…sums up a whole lot of adult life, but I don’t mean to minimize what you went through. You came through a life-threatening experience, and you life is changed forever. From the outside, it seems like you have a pretty good handle on all of it.
thank you ❤️
Add me to the list of people who are very glad you are here blogging a year later :). Over the last year, I’ve known several people who have had running-ending injuries or health conditions (including a gal who also developed VT who does jog at a very much reduced intensity but decided to give up driving), and it’s made me think about what I will pivot to when the day comes that I can’t run anymore. Because the only thing that’s guaranteed is that none of us will be able to do it forever! I love that it sounds like you get so much enjoyment from playing the piano and singing. Maybe one day you’ll have a family band 🙂
oh wow! I’m going to assume she doesn’t have ARVC since that’s just a small subset of VT. I guess everyone gets to make their own choices! Re: driving, from what I’ve read you can even continue driving through a shock (it feels like a hard kick in the back, but people do not generally pass out) PLUS I presume I’d probably get some warning and be able to pull over if my heart was doing crazy stuff on the road. I wish I could say I felt as passionate about music, but I am not sure I will . . . you never know though I guess!! And there are lots of things to do out there. I don’t have to necessarily place my prior obsession with just one thing 🙂
Just wanted to be clear that I was definitely not suggesting anything about your running/driving calculus! I definitely don’t think I would choose to run anymore if I didn’t feel safe driving!
oh no worries at all! I honestly kinda WISH i had an excuse not to drive, ha!!!!
I’d write more about the health stuff, but it’s not my story to publicly tell. Just know that all your feeling are valid.
Alas, we can’t ignore world news in our house. My daughter’s bat mitzvah tutor is currently stranded in Israel, and her good friend lives there. They zoom every Sunday and so we had to explain what was going on. They have had multiple zoom session from their bomb shelter over the years. Our carpool family is Israeli with extended famiky there, as is one of teachers who may be recalled to the army. So many people we know are directly impacted. We are/were planning to go at the end of the year for her friends bar mitzvah/vacation, so we’ll see how things play out over the next few months.
oh wow I’m so sorry — I know, it is devastating that there is so much violence right now. And it hurts so much to think about the lives impacted – of all kinds of people everywhere just like us trying to be with family / friends / do their jobs / enjoy life, as they should be able to. I really hope things calm down SOON.
I admire your transparency and vulnerability in sharing the journey you’ve walked through with this diagnosis. I’m sure you’ve seen this yourself, but it’s normal and healthy to walk through all the stages of grief with this diagnosis because in very real ways, you are saying goodbye to a part of your self identity and a big part of how you spent your days and structured your life. It’s healing to feel it all- the sadness, frustration, anger, etc. I also admire how you’ve encouraged yourself to pivot and find new hobbies/outlets to try. In some ways, we’ll all do this as we get older and realize we can’t do XYZ like we used to and will have to switch our mindset to focus on the things we are still able to do instead of what we can’t. You’re showing us all how to do that with grace, humility, and even humor. Thank you for sharing it; you’re inspiring me and I’m sure countless others by being so open about it. <3
thank you Brittany!!
This diagnosis for NOT running is much more critical than mine (two knee replacements) but I remember the feeling of NOT running. I would joke about running the runners over with my car. Laugh don’t cringe at that. I would never. You seem to have a good outlook on life despite all of it. Smiley face.
Hi- Saw you share this post on one of the ARVC Facebook support pages, but now that I’ve read it, I can’t find your post again to comment over there. Just wanted to say your story is my story (gene-elusive former runner)- except that it took from 2019 to 2023 to finally get a proper diagnosis (and 4 ambulance rides and one time being shocked fully awake in the ambo!). I share so many of your feelings about the loss of running– and knowing that it’s 100% worth it to be around longer for my kids. Also a Pilates girl, and have learned that powerwalking is so underrated as a form of exercise 🙂 And like you, I feel really blessed that even if I have a scary life-threatening disease, it doesn’t interfere with my life much, and I don’t struggle with pain everyday like some people. Would be happy to connect if you ever want to share stories- I’m “Meg Walburn Viviano” over on FB. Thanks for your blogging!
Hi! I really only use FB for the ARVC board but feel free to email me any time (and I can share my cell)! I absolutely would love to have some ‘ARVC friends’ as crazy as that sounds!! I was awake screaming for them NOT TO SHOCK ME (bc I was so scared) and thankfully I guess i was stable enough (and we were very close to the hospital) becuase i think it would have been even more traumatic. (Though it also probably would have worked!)
I listen to your podcast faithfully every Monday, which thank you for giving me something to dive right into to get my week started. I’ve heard you talk about your health challenge but never realized the true depth of what you were dealing with. Thank you for sharing the real details as it may very well help someone else1 You are an inspiration!
I appreciate your honesty candor about this diagnosis and how it’s affected your day-to-day life. Running was such a big part of your life, and having that stripped away on TOP of dealing with this life-altering diagnosis must have felt like such whiplash. I’m glad you have found alternatives to running, even if they won’t replace what that form of exercise meant to you.
thank you so much Stephany!!
We are really glad you are here too.
Thanks for sharing this.
thank you Elissa!
Sarah, I’m so grateful that you are here to give a “one year later” update. Thank God! Re-reading…this was such a traumatic event. While there is so much to be grateful for (your survival! Quick diagnosis! Seeing the experts at Hopkins! Your ability to continue with some form of exercise! Etc), I’m mostly in awe of how well you seem to have processed going through this near death experience. I’m just floored. Any ongoing upset feelings you have about what happened to you are VALID. AND—it’s so wonderful and healthy that you are able to find the areas of gratitude.
None of us is promised tomorrow. This is such a stark reminder to live our days well and appreciate what we have. Thanks so much for sharing and I am so happy you are here.
thank you so much E!!!! so very much appreciated. <3