IT HAPPENED TO ME: Having Heart Surgery At 21 Was The Best Thing Ever

My heart arrhythmia, Long QT syndrome, probably saved my life.
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Lauren B. Mangiaforte
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My heart arrhythmia, Long QT syndrome, probably saved my life.
Yearly scar selfie: May 2015, seven years later.

Yearly scar selfie: May 2015, seven years later.

I got shot by a fake gun and almost died.

I saw the video two weeks later, the same day the doctor told me I needed heart surgery. Sitting there, right in the living room, I watched my mortality on TV. I popped the DVD in and saw my head bounce once, twice, on the hard marble floor as I fainted. 

I counted the seconds dripping by until I woke up, flat-backed, concussed, looking even more dead than my character should have. One. Two. Three. Four. Five. Six. Twenty. There’s nothing quite like sitting back with a remote in your hand, watching your life hanging there, asking yourself to wake up.

And I did wake up. Like each time before, my heart stopped tripping over itself and got it together. What happened during the performance that night made perfect sense given my heart arrhythmia, Long QT syndrome (symptom list: fainting; sudden cardiac death). 

The other actress had missed her cue, jumped a line, and fired the fake gun at me. The noise, the adrenaline of performing, the emotion of the 5-minute-long monologue I’d just delivered left my jittery ticker at uneasy and erratic. And so it stopped to catch its breath — and while it did, I fainted.

It took a while for me to be diagnosed, even given the family history. My mother’s aunt passed away at a young age of a probable arrhythmia. No one guessed, or wanted to guess, that I had had an episode when I passed out in my parents’ kitchen one night, landing on my right knee at an angle that caused it to break. 

Going into shock from the break woke me up, saved me, maybe. I insisted that I hadn’t tripped, slipped, or stumbled. I’d only seen black. In the back of my mind, the thought shyly sat: “Maybe it’s Long QT.” Not wanting to be accused of being dramatic and therefore somehow disrespectful, it stayed there silently for years.

After a few more less-sexy-than-dying-on-stage-or-breaking-your-knee episodes (Barnes & Noble, the hallway in my college dorm), I finally said something. 

I met my cardiologist, who ran some EKGs on which nothing showed up abnormally (Long QT can be notoriously hard to catch in the act), and prescribed some meds to keep my heart rate and blood pressure low. 

And so it went until that night on stage, until she said enough was enough. Until she said I was just 21. Until she said my life didn’t have to be cut short, and that an implanted defibrillator to shock me back, if necessary, would keep me safe.

The ironic thing about my doctor pitching heart surgery on the basis of keeping me safe was that I had spent my entire second and third years of college bouncing back and forth between a sickening fear that I’d drop dead walking across campus and succumbing to the will to do it myself. 

In addition to dealing with the diagnosis, I was grieving the loss of a close friend who’d killed himself, going through an eviscerating breakup with my first love after 3 years together, and the disappearance of the majority of my friends, who couldn’t deal with the level of depression I was consistently operating on. 

Between being hard-wired to self-destruct and goading myself into proactively contributing to my death, life became unbelievably surreal. The suggestion of heart surgery wasn’t the worst of it, not by a long shot, and so I agreed to it.

Yearly scar selfie: one year after surgery.

Yearly scar selfie: one year after surgery.

Unsurprisingly, I spent a lot of those weeks before surgery thinking about my life and whether it meant anything. It didn’t then seem to. 

As a young woman, I had been close to death and sadness and endings I didn't want and couldn't see coming. I didn't care if I lived or not, and so the surgery itself seemed like a mild inconvenience, something I was doing for my parents and not for me. I don’t recall sadness. I recall resignation, even hope that it would all be over soon.

I recall, for instance, not being surprised in the least that life was taking one last shit on me when we had to put my childhood dog to sleep two weeks before surgery. I was so low that as I laid my hand on his chest as he died, I thought, “Why does this sweet creature have to die, when I may or may not have to live?”

But something happened the morning of my surgery that I hadn't seen coming either, and it was the biggest gift of my life. As the nurses and doctors hummed around me, sticking me with needles and hooking me up to beeping machines, I began to panic and one cool thought landed like an ice cube in my hot, hot mind: “You never wrote that book, Lauren.” My heart insisted this as a man came by with a clipboard, asking me to sign on a dotted line.

“What’s this?”

“Liability. The risks are low, but they exist.”

“Like I could die?”

“Death is a risk.”

I stared. I sighed. Death is a risk. “You never wrote that book, Lauren.” 

Maybe it happened then because I had said goodbye to my parents, because I was cold on the hospital bed with my gown open to the front and vulnerable as hell, but my purpose in life decided to speak up right then and there. The reality of how close I had been to death, both active and passive, solidified, and I felt the enormity of my fear. And a new kind of terror settled on me as I counted back from 10, because I finally and truly wanted to live again.

I wish I could tell you I woke up a new woman right away, that I came out of anesthesia whistling like a Disney princess and that I felt happy to be alive and that I embraced my newfound purpose with a formidable determination. 

I did, but it took a while. The hours after my surgery included cursing out a nice, young nurse not so much older than me because she wanted me to pee in a bedpan, actually peeing in a bedpan, trying not to scream at every doctor who made the not-funny comment “You’re just a baby! what are you doing on this floor?” or “You’re the youngest person in the cardiology unit by about 30 years!” 

The days and weeks after included not being able to fall asleep in the hospital, not being able to fall asleep at home, remembering what it felt like to wake up during surgery to feel someone pulling a wire out of my heart, yelling for pain meds and throwing up the pain meds, and explaining to my family full of athletes why I didn't feel like going for a run two weeks after my most vital organ had been surgically altered.

My heart, though, was fixed. Both ways. It wanted all of this so badly. I realized how beautiful the pot of daisies on my dresser were now, how lucky it was to have a family and some friends who visited and called and wrote, it put pen to paper. I became the oldest cliché in the book (move over George Bailey and Ebenezer Scrooge) and I was fucking thankful for it.

I made good on all the gratitude. In the seven years since, I’ve lived in Scotland for two years and Berlin for two summers, gotten a master's degree in literature, moved to New York without any money or a job and avoided starvation, traveled widely, helped to build a thriving start-up, and begun dating a kind and talented fellow novelist. 

I’ve spent some time in therapy talking about how my ex-fiancé broke up with me transatlantically in an email, after I’d bought my dress (that’s another IHTM) and very little time talking about all those times I almost died. 

That’s what I like to call “freedom from fear.” That’s what I like to call “walking through the fire.”

None of this means I don’t still get down sometimes, but most days I sincerely forget about my defibrillator. It’s tucked quietly under my pectoral muscle, waiting to help if I need it, and by now my scar is thin and faded. 

I’m usually only reminded of it when I have to go in for my yearly checkup, or at airport security. I spend a lot of time at airport security getting putdowns from weird strangers. It’s worth it, though, all of it, to live.