Having Open-Heart Surgery Didn't Stop Me From Running the New York City Marathon

Jane Lee, Ph.D., didn't worry about her congenital heart defect — until she was told she needed open-heart surgery in her 20s. But against all odds, she still made it past the finish line.

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Photo: Jane Lee / American Heart Association Go Red for Women

When you're in your 20s, the last thing you worry about is your heart health — and I say that 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 wasn't at the forefront of my mind while I was living my life as a student pursuing her Ph.D. in New York City. In 2012, at 24-year- old, 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 moving to the Big Apple for college. Before I started training, I considered myself a casual runner, but this was the first time I was really upping the mileage and seriously challenging my body. As each week passed, I hoped to become stronger, but the opposite happened. The more I ran, the weaker I felt. I couldn't keep pace, and I struggled to breathe during my runs. It felt like I was constantly winded. Meanwhile, my twin was shaving minutes off of her pace like it was NBD. At first, I chalked it up to her having some sort of competitive advantage, but as time passed and I kept falling behind, I wondered if something might actually be wrong with me. I ultimately decided there's no harm in paying my doctor a visit — even if it was just for peace of mind. (Related: The Number of Push-Ups You Can Do May Predict Your Heart Disease Risk)

So, I went to my general practitioner and explained my symptoms, thinking that, at most, I'd have to make some basic lifestyle changes. After all, I was living a very fast-paced life in the city, knees-deep getting my Ph.D. (so my sleep was lacking), and training for a marathon. To be safe, my doctor referred me to a cardiologist, who, given my history with a congenital heart defect, sent me to get some basic tests, including an electrocardiogram (ECG or EKG) and echocardiogram. A week later, I went back in to discuss the results and was given some life-changing news: I needed to undergo open-heart surgery (again) with the marathon just seven months away. (Related: This Woman Thought She Had Anxiety, But It Was Actually a Rare Heart Defect)

Turns out, the reason I was feeling tired and struggling to breathe was that I had pulmonary regurgitation, a condition in which the pulmonary valve (one of the four valves that regulate blood flow) doesn't close properly and causes blood to leak back into the heart, according to the Mayo Clinic. This means less oxygen to the lungs and inherently less oxygen to the rest of the body. As this issue gets worse, as was the case for me, doctors usually recommend undergoing a 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 regurgitation is a common outcome for people with congenital heart defects. Most likely, I had it for years and it progressively got worse but I just noticed it then because I was asking more of my body. My doctor explained that a lot of people don't experience any noticeable symptoms earlier on — as was the case for me. Over time, however, you might start feeling overwhelmingly tired, out of breath, faint during exercise, or notice an irregular heartbeat. For most people, there isn't a need for treatment, but rather regular check-ups. My case was severe, leading me to need a complete pulmonary valve replacement.

My doctor emphasized that this is why it's important for people with congenital heart defects to have regular check-ups and keep an eye out for complications. But the last time I had seen someone for my heart was almost a decade prior. How did I not know that my heart needed monitoring for the rest of my life? Why didn't someone tell me that when I was younger?

After leaving my doctor's appointment, the first person I called was my mom. She was just as shocked about the news as I was. I wouldn't say I felt mad or resentful toward her, but I couldn't help but think: How couldn't my mom know about this? Why didn't she tell me that I needed to be going to regular follow-ups? Surely my doctors told her — at least to some degree — but my mom is a first-generation immigrant from South Korea. English isn't her first language. So I reasoned that a lot of what my doctors may or may not have said to her got lost in translation. (Related: How to Create an Inclusive Environment In the Wellness Space)

What solidified this hunch was the fact that my family had dealt with this kind of thing before. When I was 7-years-old, my father passed away from brain cancer — and I remember how difficult it was for my mom to make sure he was getting the necessary care. On top of the mountainous cost of treatment, the language barrier often felt insurmountable. Even as a young child, I remember there being so much confusion around exactly what treatments he needed, when he needed them, and what we should be doing to prepare and be supportive as a family. There came a point when my dad was having to travel back to South Korea while he was sick to get care there because it was such a struggle navigating the health care system here in the U.S. I just never imagined that in some convoluted way, the same issues would affect me. But now, I had no option but to deal with the consequences.

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Jane Lee / American Heart Association Go Red for Women

What It Took for Me Still Complete My Goal

Even though I was told that I didn't need the surgery right away, I decided to get it done, so I could recover and still have time to train for the marathon. I know that might sound rushed, but running the race was important to me. I spent a year working hard and training to get to this point, and I wasn't about to back down now.

I underwent surgery in January 2013. When I woke up from 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 that pulsed through my chest to subside and for weeks I wasn't allowed to lift anything above my waist. So most day-to-day activities were a struggle. I had to really rely on my family and friends to get me through that challenging time — whether that was helping me put on clothes, grocery shopping, getting to and from work, managing school, amongst 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 exercise. As you can imagine, I had to start slow. The first day back at the gym, I hopped on the exercise bike. I struggled through the 15- or 20-minute workout and wondered if the marathon was really going to be a possibility for me. But I remained determined and felt stronger each time I got on the bike. Eventually, I graduated to the elliptical, and in May, I signed up for my first 5K. The race was around Central Park and I recall feeling so proud and strong for making it that far. At that point, I knew I was going to make it to November and cross that marathon finish line.

Following the 5K in May, I stuck to a training schedule with my sister. I had completely healed from my surgery, but it was hard to pinpoint how different I actually felt. It wasn't until I started logging a lot of miles that I realized how much my heart had been holding me back. I remember signing up for my first 10K and just cruising past the finish line. I mean, I was out of breath, but I knew I could keep going. I wanted to keep going. I felt healthier and so much more confident. (Related: Everything You Need to Know About Marathon Training for Beginners)

Come marathon day, I expected to have pre-race jitters, but I didn't. The only thing I felt was excitement. For starters, I never thought I would run a marathon in the first place. But to run 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's an incredible race. It was so fun running through all of the boroughs 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 L.A., recorded a video for me that was played on a screen while I was running. It was powerful and emotional.

By mile 20, I started to struggle, but the amazing thing is, it wasn't my heart, it was just my legs feeling tired from all of the running — and that actually motivated me to keep going. Upon crossing the finish line, I broke into tears. I made it. Despite all the odds, I made it. I have never been more proud of my body and its resilience, but I also couldn't help but feel grateful for all the wonderful people and health care workers who made sure I got there.

How This Experience Has Impacted My Life

For as long as I live, I will have to monitor my heart. In fact, it's expected that I will need another repair in 10 to 15 years.Even though my health struggles 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 for me to keep my heart health in check. But my biggest takeaway is how important access to proper health care really is, especially for marginalized communities.

Before struggling 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 surrounding what happened to my father, I decided to focus my career on the health disparities among racial and ethnic minority and immigrant communities upon graduating.

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

On top of structural and socioeconomic barriers, language barriers, in particular, pose tremendous challenges in terms of providing immigrants access to high-quality and effective health care. Not only do we need to address that issue, but we also need to provide services that are culturally appropriate and tailored to individual needs to enhance preventative care services and curb future health issues amongst this group of people. (BTW, did you know that women are more likely to survive a heart attack if their doctor is female?)

There is still so much that we don't understand about how and why the disparities immigrant populations face every day are overlooked. So I'm dedicated to researching ways to enhance people's health care experiences and working within communities to find out how we all can do better. We must do better to provide everyone with the home and health care they deserve.

Jane Lee is a volunteer for the American Heart Association's Go Red For Women "Real Women" campaign, an initiative that encourages awareness about women and heart disease and action to save more lives.

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