Open heart surgery didn't stop me from running the New York City Marathon

Open heart surgery didn't stop me from running the New York City Marathon

When you're in your 20s, the last thing you're worried about is your heart health — and I say this from experience as someone who was born with Tetralogy of Fallot, a rare congenital heart defect. Sure, I had open heart surgery as a child to treat the defect. But years later, it was no longer at the forefront of my mind as I lived my life as a student pursuing her Ph.D. aimed for. in New York City. In 2012, at the age of 24, I decided to start training for the New York City Marathon, and soon after, life as I knew it changed forever.

Finding out I needed heart surgery

Running the New York City Marathon was a dream my twin sister and I had ever since we moved to the Big Apple for college. Before I started training, I considered myself a casual runner, but this was the first time I really increased the mileage and seriously challenged my body. With each passing week I hoped to get stronger, but the opposite happened. The more I ran, the weaker I felt. I couldn't keep up and struggled to breathe during my runs. It felt like I was constantly out of breath. Meanwhile, my twin sister shaved her pace by minutes like it was NBD. At first I credited it with a competitive advantage, but as time passed and I fell further and further behind, I began to wonder if there was something wrong with me. Ultimately, I decided there was no harm in seeing my doctor - even if it was just for reassurance. (

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So I went to my GP and explained my symptoms, thinking the most I needed to do was make a few basic lifestyle changes. I ended up living a very fast-paced life in the city and knee-deep in my Ph.D. (so I was missing sleep) and training for a marathon. To be on the safe side, my doctor referred me to a cardiologist, who sent me for some basic tests, including an electrocardiogram (EKG or EKG) and an echocardiogram, due to my history of a congenital heart defect. A week later, I went back to discuss the results and received some life-changing news: I had to have open-heart surgery (again) because the marathon was only seven months away. (

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It turns out I was feeling tired and struggling to breathe because I had pulmonary insufficiency, a condition in which the pulmonary valve (one of the four valves that regulate blood flow) doesn't close properly and blood flows back into the heart, according to the Mayo Clinic. This means less oxygen for the lungs and less oxygen for the rest of the body. When this problem worsens, as it did for me, doctors usually recommend undergoing pulmonary valve replacement to restore regular blood flow to the lungs.

You're probably wondering, "Did running cause this?" But the answer is no; Pulmonary insufficiency is a common consequence in people with congenital heart defects. Most likely I had it for years and it was getting worse, but I only noticed it at the time because I was demanding more from my body. My doctor explained to me that many people don't have any noticeable symptoms before - like me. However, over time, you may feel overwhelmingly tired, out of breath, faint during exercise, or notice an irregular heartbeat. Most people do not need treatment, but rather regular check-ups. My case was severe, resulting in me needing a complete pulmonary valve replacement.

My doctor emphasized that it is therefore important for people with congenital heart defects to have regular examinations and watch out for complications. But the last time I had seen someone about my heart was almost a decade ago. How could I not know that my heart would need to be monitored for the rest of my life? Why didn't anyone tell me this when I was younger?

After I left my doctor's appointment, the first person I called was my mother. She was just as shocked by the news as I was. I wouldn't say I felt angry or resentful towards her, but I couldn't help but think: How could my mother not know about this? Why didn't she tell me that I needed to go for regular checkups? Sure, my doctors told her - at least to some extent - but my mother is a first-generation immigrant from South Korea. English is not her native language. So I thought a lot of what my doctors may or may not have told her was lost in translation. (

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What solidified this suspicion was the fact that my family had dealt with such things before. When I was 7 years old, my father died of brain cancer - and I remember how difficult it was for my mother to make sure he got the care he needed. In addition to the high cost of treatment, the language barrier often seemed insurmountable. Even as a young child, I remember there being so much confusion about exactly what treatments he needed, when he needed them, and what we should do to prepare and support ourselves as a family. There came a point where my father had to travel back to South Korea while he was sick to get treatment there because it was so difficult to navigate the healthcare system here in the US that in a confused way I never imagined the problems would affect me. But now I had no choice but to deal with the consequences.

What it took for me to still achieve my goal

Although I was told I didn't need the surgery right away, I decided to have it so I could recover and still have time to train for the marathon. I know this may sound rushed, but for me it was important to do the race. I've worked and trained hard for a year to get to this point and I wasn't going to give up now.

I had surgery in January 2013. When I woke up after the procedure, all I felt was pain. After spending five days in the hospital, I was sent home and began the recovery process, which was brutal. It took a while for the pain pulsing through my chest to subside, and I wasn't allowed to lift anything above my waist for weeks. So most everyday activities were a struggle. I've really had to rely on my family and friends to get me through this challenging time - be it getting dressed, grocery shopping, getting to and from work, managing school, among other things. (Here are five things you probably don't know about women's heart health.)

After three months of recovery, I was cleared to play sports. As you can imagine, I had to start slowly. The first day back at the gym I hopped on the stationary bike. I struggled through the 15 or 20 minute workout, wondering if the marathon was really a possibility for me. But I remained determined and felt stronger every time I got on the bike. I finally completed the elliptical and in May I signed up for my first 5K. The race was in Central Park and I remember feeling so proud and strong to have made it this far. At this point I knew I would make it to November and cross the finish line of the marathon.

After the 5K in May, I stuck to a training plan with my sister. I was completely healed from my surgery, but it was hard to express how different I actually felt. It wasn't until I started racking up the miles that I realized how much my heart had been holding me back. I remember signing up for my first 10K and just crossing the finish line. I mean, I was out of breath, but I knew I could keep going. I wanted to move on. I felt healthier and so much more confident. (

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On marathon day, I expected I would be shaking before the race, but that wasn't the case. The only thing I felt was excitement. First of all, I never thought I would ever run a marathon. But doing one so soon after open-heart surgery? That was so empowering. Anyone who has run the New York City Marathon will tell you that it is an incredible race. It was so much fun running through all the districts with thousands of people cheering you on. So many of my friends and family were on the sidelines and my mom and older sister, who live in LA, recorded a video for me that played on a screen while I ran. It was powerful and emotional.

At mile 20 I started to struggle, but the amazing thing is that it wasn't my heart, it was just my legs that were tired from all the running - and that actually motivated me to keep going. As I crossed the finish line, I burst into tears. I did it. Despite all odds, I did it. I've never been more proud of my body and its resilience, but I also couldn't help but be grateful for all the wonderful people and healthcare workers who made it possible for me.

How this experience influenced my life

As long as I live, I will have to monitor my heart. In fact, it is expected that I will need another repair in 10 to 15 years. While my health issues are definitely not a thing of the past, I take comfort in the fact that there are things about my health that I can control. My doctors say that running, staying active, eating healthy, and investing in my overall wellness are all great ways to keep my heart health in check. But my biggest takeaway is how important access to adequate healthcare really is, especially for marginalized communities.

Before I struggled with my health, I was pursuing a Ph.D. in social work, so I've always had a desire to help people. But after undergoing surgery and reliving the frustration of what happened to my father, I decided to focus my post-graduation career on health disparities among racial and ethnic minority and immigrant communities.

Today, as an assistant professor in the School of Social Work at the University of Washington, I not only teach others about the prevalence of these disparities, but I also work directly with immigrants to help them improve their access to health care.

In addition to structural and socioeconomic barriers, language barriers in particular represent enormous challenges when it comes to providing immigrants with access to high-quality and effective healthcare. Not only do we need to address this issue, but we also need to provide culturally appropriate and individualized services to improve preventive services and limit future health problems for this population. (By the way, did you know that women are more likely to survive a heart attack if their doctor is female?)

There is still so much we do not understand, including how and why the inequalities that immigrant populations face every day are overlooked. That's why I'm dedicated to exploring ways to improve people's experiences in healthcare and working in communities to find out how we can all do better. We must do more to give everyone the home and health care they deserve.

Jane Lee volunteers with the American Heart Association's Real Women's Go Red For Women campaign, an initiative that promotes awareness of women and heart disease and action to save more lives.