' No one told me I needed lifelong care'
Jane Lee lived most of her life without worrying about the heart condition she’s had since birth. Tetralogy of Fallot is a rare combination of four defects that required her to undergo surgery as a baby and to be examined regularly by a cardiologist.
Despite the seriousness of the diagnosis, Lee said, she had a healthy life and didn’t think much about it. But after her father died from brain cancer when she was 7 years old, she noticed the language barrier between doctors and her South Korean mother. It impacted Lee because she didn’t realize the importance of continuing to see a specialist.
“I can really identify with those who get lost in the system,” she said. “When I left for college, no one told me I needed lifelong care. I had to take the initiative for my own health, and I remember how complicated that was as a young adult.”
Lee started to notice something was wrong in 2012, when she started training for the New York City Marathon with her twin sister, Stella. Jane, who was in her 20s, was always tired and fatigued quickly. She wasn’t improving her running time like her sister, despite both of them training the same. The symptoms led her to see a specialist who realized she needed open-heart surgery, a pulmonary valve replacement, in January 2013.
This meant her training had to stop.
"I remember asking the doctors, ‘Once I get this surgery, can I still run the marathon?’”
The answer was yes, but it would be a months-long process. After getting cleared to exercise post-surgery, she added short times on the stationary bike and gradually increased her time and endurance. By November 2013, she was strong enough to run the marathon with her sister.
“When I crossed that finish line, I remember I burst into tears,” Lee said. “It just felt like a huge triumph, and I was overcome with so many emotions. I am so thankful for the way things worked out.”
Discovering she needed heart surgery while training for the marathon made her pause.
She said she remembers thinking: “What if I hadn’t been running? What could have happened? What if I just ignored it?”
Luckily, she didn’t.
Having a lapse in cardiovascular care is a mistake she hopes others born with heart conditions don’t make, especially during their teens and early 20s.
“Just be aware and listen to your body,” she said. “Even if it’s something you don’t think is a big deal, it’s better to get it checked.”
Now, Lee lives in Seattle and is a new mom grateful to have had no problems during her pregnancy. She’s also thankful that her daughter is healthy with no heart conditions.
Lee is an assistant professor at the University of Washington’s School of Social Work. She researches health disparities among racial and ethnic minority and immigrant communities.
“My own health issues and my father’s brain cancer, and the struggle of my parents to communicate with the doctors, definitely shaped my trajectory,” she said. “There are a growing number of people who were born with congenital heart disease who are now adults living happy, healthy lives. I’m grateful to be one of them.”