Let’s BeReal: Why I have a pacemaker at age 20

Hey Lemon8! So far I have LOVED how open, genuine, and real everyone is on this app… and I wanted to do the same before I started posting more content.

So here’s a fun fact about me: I have a pacemaker! I’m 20 years old, and I got my device installed just a few months ago. Did you know that only 0.04% of people under the age of 60 have pacemakers?! Kinda wild…

It’s actually a crazy story, and you can read the whole thing farther down ⬇️ While I don’t want my device to define me, it has become an important part of who I am, and the entire experience has definitely shaped me and forced me to grow faster than I ever expected. But even more, it helped me reset the way I think about life, form stronger connections with the people around me, and learn a lot about myself and my values. And now, it’s me and Jarvis (that’s my pacemaker… like Iron Man, get it?) against the world 🫀🔋

#lemon8diary #embracevulnerability #pacemakerlife #hellolemon8 #chronicillness #chronicillnessjourney #heartdefect

So here’s the full story: (if you read this all the way through, you’re amazing and I love you 🫶 and if you don’t, that’s okay, you’re still incredible)

At 20 years old, I heard the 5 words I never expected to hear, and the 5 words that would change my reality as I always knew it:

“... you urgently need a pacemaker”.

At first, this seemed absurd, out of the question… isn’t a pacemaker something old people get? Why the heck would a 20 year old one need one?

To get to the answer, we actually need to flash back 20 years earlier, to when I had open heart surgery at just 8 weeks old. I was born with 3 holes in my heart - 2 ventricular septal defects and an atrial septal defect, if we want to get technical with it. This was actually more common in infants than you’d think, and the procedure was fairly easy, given that the doctors were operating on a heart the size of a walnut. After the surgery, they proudly told my parents that I would go on to live a completely healthy and normal life, and after a few check-ups until my 18th birthday, I would be in great condition for the rest of my life. Apparently, my heart had other plans.

Flash forward to 20 years later, when I started experiencing extreme shortness of breath and chest tightness after doing a simple task like carrying my laundry back to my room. Did I suddenly develop asthma? Maybe it’s bronchitis? I wracked my brain for an answer, not even thinking at the time it could be related to my heart. I shrugged it off, thinking maybe it would just go away on its own. After a trip to the ER just a few weeks later, I then realized… maybe it’s not quite that simple.

The doctors finally diagnosed me with an arrhythmia, however they assured me that it was actually pretty normal in people my age, and should, in fact, just “go away on its own”. I took that as a good sign, thinking maybe my anxiety about it was really all for nothing. WRONG AGAIN. After another many more visits to my primary doctor and even a few trips to the cardiologist, and finally wearing a heart monitor for a few weeks, I learned that it was a bit more serious than anyone thought. An urgent call from my doctor at around 9:00 on a random Thursday night was all it took to completely flip the situation, and my entire life. “You need to come in tomorrow, we think that you urgently need a pacemaker”... those 5 words. I’ll be honest, I didn’t believe them. I went through a mental rollercoaster over the next 2 months, convincing myself I was getting better, and a pacemaker was definitely an over-the-top solution. Maybe there were drugs that would help, or changing my diet, or maybe it was as simple as exercising more? I did everything in my power to delay the procedure, all while going through a mental hell of anxiety and depression as a result of this life-changing news. I had lost my trust in doctors, seeing as they had been telling me for years that everything I was dealing with - including 5 years of unexplainable dizzy spells that were just a precursor to my condition - were completely normal. I didn’t know what to think, or who to believe, all I knew was absolutely terrified.

Finally, after experiencing the worst dizzy spells of my life for 3 days straight, taking yet another trip to the ER, and realizing that it wasn’t “just my anxiety”, I finally had an emergency pacemaker implant, 2 weeks before my scheduled surgery. But in those last 3 days, I realized that if I ever wanted to feel better, it needed to happen. My heart rate had gotten down to the 30s, I couldn’t sleep because of the dizziness, and I had multiple episodes of near fainting that could have been fatal if I was driving a car.

Looking back on it now, I am actually glad it happened the way it did. Turns out, an emergency procedure was exactly what I needed to get through it, and now that I finally have it, I feel a million times better, and I am really just grateful to be alive (wow that sounds dramatic but I guess it’s true). When I told my friends the news about the pacemaker, in the midst of my depressive episodes and major anxiety attacks, my closest friends not only assured me that it would be okay and it was for the best, but they also all coincidentally said “You’ll be just like Iron Man!” (the Avengers are the key to my heart - pun kind of intended). So, I named my pacemaker JARVIS - after all, it’s proof that I do have a heart, and my heart is thankfully still beating.

Shoutout to the incredible team at #TuftsMedicalCenter , you truly saved my life in more ways than I could ever thank you for. 🩵