' 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.

Esto significaba que su entrenamiento debía parar.

“Recuerdo haber preguntado a los médicos, ‘Una vez que me someta a esta cirugía, ¿todavía puedo correr la maratón?’”

La respuesta fue sí, pero sería un proceso de meses. Después de recibir autorización para hacer ejercicio después de la cirugía, ella agregó tiempos cortos en bicicleta estática y gradualmente aumentó su tiempo y resistencia. Antes de noviembre del 2013, era lo suficientemente fuerte como para correr la maratón con su hermana.

“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.”

Descubrir que necesitaba una cirugía cardíaca mientras entrenaba para la maratón la hizo detenerse.

Dijo que recuerda haber pensado: “¿Y si no hubiera estado corriendo? ¿Qué podría haber ocurrido? ¿Qué pasa si simplemente lo ignoro?”

Afortunadamente, no lo hizo.

Tener una interrupción en la atención cardiovascular es un error que espera que no cometan otras personas que nacieron con afecciones cardíacas, especialmente durante la adolescencia y principio de los 20.

“Solo debes estar atenta y escuchar a tu cuerpo”, cuenta. “Incluso si es algo que no crees que sea importante, es mejor que lo revisen”.

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.”