On January 3, I bungee jumped off the Kawarau Bridge in Queenstown, New Zealand. Exactly two years prior to that, on January 3, 2017, I was in an emergency room in New Jersey, struggling to breathe.
I had been at work earlier that day and was having so much trouble breathing that my colleague could hear me trying to catch my breath from across the hall. I wanted to just go home and take a nap; I assumed I was fighting a winter cold. But my boss, a doctor, sent me to the emergency room instead.
When I got to the ER, I told the doctors it felt like a weight was sitting on my chest.
The doctors performed an electrocardiograph and an echocardiogram, to check the health of my heart. Both of these tests came back slightly abnormal, but given my overall good health (I ran half marathons, ate healthy foods, and generally had a very active life), and no glaring signs or history of heart issues, the doctors weren’t worried.
And I wasn’t very worried either. For years, despite being a lifelong athlete, I always had trouble breathing when I ran. Even when playing competitive sports growing up and then working out almost daily as an adult, I wasn’t able to run faster than a 10-minute mile. No matter how hard I trained, I had a difficult time breathing when I tried to increase my pace. But every time I saw a doctor about it, they sent me home with a clean bill of health.
So, when the doctors at the ER again told me nothing was wrong when I was having trouble breathing, I thought, “Okay, I guess it’s just the same old thing.” And I went home and went to bed.
I called my parents the next morning to let them know what had happened, and they reminded me of a critical detail I had long forgotten: I had been born with a heart murmur. By the time I turned 5 years old, doctors told my parents the murmur had gone away. But I wondered if there may be a connection to this childhood condition and the breathing difficulties I was experiencing as an adult.
So I connected with a group of doctors who specialize in adults with congenital heart defects. A cardiac MRI revealed I had actually been born with an Atrial Septal Defect (ASD), which is a hole between the left and right atria of the heart, and is, indeed, associated with heart murmurs. Although it was hard to hear, it turned out I still had that murmur.
Only about 2,000 children in the United States are born with ASD each year. In many children, the hole is small enough that it closes naturally. In other people, like me, the hole is larger and doesn’t close, allowing blood to flow the wrong way in my heart.
Symptoms can include shortness of breath, fatigue and exercise intolerance. But those are pretty vague symptoms, and it’s a tough condition to diagnose, especially in a patient who is active.
Based on the cardiac MRI, the doctors thought the hole in my heart was about 1.5 cm and could be closed using a metal device that looks a little bit like two cymbals. The device would be inserted through a vein in my leg, and then would be positioned to clamp around the edges of the hole in my heart. Over time, my heart cells would grow over the device, resulting in a permanent repair.
I went to the hospital for the procedure but when I woke up from anesthesia several hours later, I found out that they were unable to fix it in this simple way. It turned out that the hole was much larger than the MRI had suggested and there was no device that could be used to fix it. Doctors said the hole in my heart was about the size of a large egg. (And given that a healthy adult heart is about the size of a closed fist, that’s a big hole.)
Two weeks later, on May 1, 2017, I underwent open heart surgery to repair the large hole in my heart.
Four days later I was released from the hospital. A week after the surgery, I walked seven miles in one day. By nine weeks after the surgery, I was running 9-minute miles without any shortness of breath!
Since my surgery, I have not just maintained my original activity levels, I’ve increased them. I ran another half marathon. I lift weights a couple times a week and I’ve incorporated yoga, spinning and Pilates into my workouts. I hiked to see the mountain gorillas in Rwanda and didn’t have to worry about being out of breath, even at altitude. And now, most recently, I swan dived off the Kawarau bridge in New Zealand.
Living with a heart defect never interrupted my life. But living with a whole heart – not a hole in my heart – has made my life even better.
In honor of Heart Month this February, I encourage all of you to live your whole lives. Run, climb, push your limits. Keep your heart healthy. And if you do face heart disease or a heart defect like I did, conquer it, in whatever way works best for you. Your heart defect doesn’t define you.
But, it’s also critically important to listen to your body. Although I was physically active, my body was telling me I had limits. And while I advocated for myself by talking to my doctors and taking myself to hospitals for testing, my underlying issues were often dismissed because of my physical fitness. So, please, be your own advocate. No one knows you better than you know yourself.
Cat Oyler is the vice president of global public health, tuberculosis at Johnson & Johnson Global Public Health. Cat lives in Hoboken, NJ.