"There's all sorts of situations in which people born with congenital heart disease need to have things done as they get older," McElhinney said, adding that the mortality rates for children with these conditions have shifted dramatically in recent decades, so treating adults with congenital heart conditions is a relatively young field.
The American Heart Association issued a statement in 2011 about best practices for moving children with congenital heart conditions from their pediatric cardiologists to adult cardiologists because of this very problem.
"Unfortunately, in the absence of structured programs to guide this transition, there is often delayed or inappropriate care, improper timing of the transfer of care, and undue emotional and financial stress on the patients, their families and the health care system," said the full article in Circulation, the medical journal of the American Heart Association. "At its worst, and as frequently happens now, patients are lost to appropriate follow-up."
Although children with congenital heart conditions too often died young, scientific advancements have led the number of adults with congenital heart conditions in the United States to exceed more than 1 million, according to the American Heart Association. However, less than 30 percent of them see the appropriate heart specialist.
As such, the American Heart Association recommends beginning the process of transferring adolescents from pediatric to adult cardiologists when they are between 12 and 14 years old.
"If you had heart surgery when you were young and you haven't seen a cardiologist in the last few years, you should," McElhinney said.
Although Lee didn't need emergency surgery to replace her pulmonary valve, she decided to get it out of the way as soon as possible. She went under the knife three weeks ago, and was out of the hospital five days later. She went back to graduate classes last week and hopes to start running again at the end of next month.
"I feel better because I don't have leakage and regurgitation happening in my heart," she said. "I'm hoping to run the marathon this year."
Lee said she tries not to think about what would have happened to her if she'd ignored her symptoms and never gone to see McElhinney.
"I'm really thankful that I did something," she said, adding that the experience taught her to take control of her health and find doctors she trusts. "Always listen to your body."