MyHeart.org.au for young people with childhood heart disease.

Quincy's Story

I can still remember the darkness taking me

Written by Quincy, 8 September 2015  |  Long QT Syndrome (LQTS 1) 

I was born with LQTS type 1.

As a baby, I was always sick. I slept way too much. My temperature was always running dangerously high. The doctors thought they might lose me, but none would help because they were on strike. My dad went to city hall (I'm Canadian) and fought until they found someone who would see me. This doctor did a few quick tests and dismissed the issue, saying I had an innocent murmur and would grow out of it as I got older. And sure enough, every year my family doctor would tell me she could hear it less and less.

When I was 14, I passed out for the first time. I would grow faint, see black dots forming, and the darkness would grow until I went under. Usually it happened during exercise; the beep test in grade nine gym class, my earliest days training martial arts, once mid-air while snowboarding, a few times just sitting at my desk. It took a year and a half of running the same tests over and over again, blood tests, ECGs, EKGs, portable heart monitors for days or even weeks at a time, etc.

Once they tested for issues with my lungs, which involved being in an airtight chamber and only able to breathe through a tube. The doctor would block the air going through the tube while I struggled to breathe, and just as my lungs were screaming for air a slow trickle would come through and finally she would open the tube. That was the scariest one.

Finally I was sent to Sick Kids, where I did all the same tests for a third time as well as one new one — a stress test, which had me hooked up to various monitors as I walked, climbed, and ran on a treadmill. After a terrifying and traumatizing year and a half of testing, on the day I had resolved to give up if they had no answer for me, I was finally diagnosed with my heart condition.

That year and a half changed my life. None of my friends knew what was going on with me, only a few teachers did. My brother thought I was making it up, and even my parents weren’t always convinced there was something actually wrong with me. But I can still remember the darkness taking me… sometimes it was welcomed, a relief almost, respite from the faintness I felt before the darkness came; most of the time, I feared it. So many times I would think, This is it, as my vision went black and my eyes grew heavy, This is how it ends. This time, I don’t wake up. But somehow I always did.

The doctors told me I was lucky. That most of the time, this condition is found in the autopsy around the age of 15. I was diagnosed just before my 16th birthday. 

At times, I still have difficulties feeling lucky to have gone through what I did at such a young age. 

This tattoo depicts a heart beat with the elongated QT interval seen in those with LQTS 1. I picked an image online that resembled my own LQTS heartbeat (mine was too close together for a good image, as my heart rate would go up to nearly 210bpm during these episodes).

I got it as a reminder to myself that I am a survivor. I already beat the odds. I am lucky to be here.

It reminds me that every day is a gift; that the last five years have been a gift, and every day I continue to live with this heart in my chest is something to be grateful for (whether it feels like it at the time or not).

Show me stories about this heart condition:
Everything has beauty, but not everyone can see. Confucius