I’m only 27, but one sudden fright could kill me
I was 17 when I found out I had a heart condition that could cause sudden cardiac arrest.
At the time, I was heavily involved in sports and played a lot of softball. After one game, I started having severe spasms in my upper back. The pain felt like it was coming through my chest, so I went to the emergency room.
That visit led to months of testing. I spent hours on treadmills, attached to electrocardiogram machines and answering questions from doctors. Eventually, I was referred to a cardiologist, who diagnosed me with Long QT Syndrome Type 2, a genetic heart rhythm disorder.
The condition affects the electrical system of the heart. In simple terms, my heart takes longer than it should to reset between beats. For someone with Long QT Syndrome Type 2, sudden shocks or scares can be dangerous. If I'm startled and not properly protected by medication, it could trigger a life-threatening heart rhythm and lead to sudden cardiac arrest.
Kelly Brooke, 27, sitting on a wall in Porto, Portugal.
I can't use alarms to wake myself up because a sudden loud noise could startle me. If my neighbor upstairs drops something in the middle of the night and it wakes me suddenly, that's something I have to think about.
The irony is that I can still do many physical activities. I work out, go paddle boarding and generally live an active life. The greater concern comes when I'm at rest and something unexpectedly shocks me.
Explaining that to people can be difficult.
When dating guys, I've had to tell them about the condition. It's not an easy conversation to have. No one likes telling someone that a playful prank could be fatal.
What made the diagnosis even more significant was that it didn't just affect me.
Because Long QT Syndrome is inherited, my entire family underwent genetic testing . Everyone on my dad's side was encouraged to be tested, and four or five relatives were found to have the condition too.
Looking back, we now suspect it may explain a tragedy in our family. One relative on my dad's side died suddenly at 23 years old. At the time, nobody knew about Long QT Syndrome. Now, we wonder whether she may have had it too.
One of the frightening things about the condition is that many people don't know they have it until something catastrophic happens.
My family and I were fortunate to find out before that.
The testing process wasn't cheap. The genetic tests alone cost around $21,000 each, although insurance covered them at the time.
Since my diagnosis, I've taken beta blockers every day. The medication helps keep my heart rate under control and I've done well on it. I haven't experienced any major issues, although recently I started noticing heart flutters, which I brought up with my cardiologist.
They found that my intervals had become more prolonged, which increases concerns about potential complications. The next step is an ultrasound of my heart, but right now I can't afford it as I no longer have insurance.
Ongoing monitoring is important because doctors are continuing to learn more about which people with Long QT Syndrome Type 2 face the greatest risk.
Researchers have previously found that certain warning signs can identify higher-risk patients even when routine heart tests appear normal. In women, unusual T-wave patterns on an ECG, which show how the heart recovers between beats, were linked to a more than threefold higher risk of serious cardiac events.
For a while I qualified for state-funded coverage, but after I started making money on TikTok, I earned too much to remain eligible, even though I'm still struggling to pay my bills.
Without insurance, a single appointment can cost around $300 before any testing or imaging is added. My medication costs roughly $200 a month and health insurance premiums can run around $900 a month for someone with a pre-existing condition.
I honestly don't know how I'll afford a pacemaker if I ever need one. I'll probably go into debt, and that's the reality for a lot of people in America.
It scares me knowing that something as simple as being startled could have serious consequences.
For years after my diagnosis, I didn't process it in the healthiest way.
Between my late teens and early twenties, I started living what I now call a bucket-list life. I convinced myself I needed to experience everything immediately. I took spontaneous trips, quit my job for two months and traveled around Europe and Hawaii on credit cards. I went on wild dates and made impulsive decisions.
I wasn't thinking rationally.
I don't regret those experiences, but I was living as though I only had six months left to live. The reality is that I can still live a long life.
As I've gotten older, I've come to terms with the diagnosis, even if I'm not happy about it.
Nobody wants to think about things like pacemakers at 27. Whenever I walk into a cardiologist's office, I'm usually the youngest person there.
But if I need one someday, I need one. I'd rather be safe and healthy than let fear stop me from accepting help.
These days, one of my biggest struggles isn't my condition itself. It's paying for the care that comes with it.
For now, I'm doing what my doctors have advised. I stay on my medication, pay attention to my symptoms and try to keep my potassium levels up. That can be as simple as eating a banana or consuming electrolytes.
After all these years, I've learned that living with Long QT Syndrome isn't about preparing for the worst. It's about finding a way to live fully while taking care of the heart that I have.
Kelly Brooke is a 27-year-old waitress from Phoenix, Arizona.
Reference
Platonov PG, McNitt S, Polonsky B, Rosero SZ, Kutyifa V, Huang A, Moss AJ, Zareba W. Risk Stratification of Type 2 Long-QT Syndrome Mutation Carriers With Normal QTc Interval: The Value of Sex, T-Wave Morphology, and Mutation Type. Circ Arrhythm Electrophysiol. 2018 Jul;11(7):e005918. doi: 10.1161/CIRCEP.117.005918. PMID: 30012873; PMCID: PMC6090555.
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