My muscles are weightless, and my mind is empty. Outside the window, a pair of older Japanese women chat quietly. I close my eyes and breathe in the steam that floats up from the geothermal water beneath me.… knowing I won’t ever again waste a single heartbeat fills me with hope that while the sun is setting on this chapter, it will rise again brighter than ever in my future.
I’m sitting in a natural hot spring in Japan, a centuries-old tradition that is believed to have healing powers. I slide deeper into the onsen in quiet meditation and hope the mineral-rich water is doing what it’s supposed to.
I’m the luckiest girl in the world, I think and then stop. Luck didn’t bring me halfway around the world. A series of events, decisions, and my own two legs did. …
Jennifer D’Ercole McKenna, 49, is a patient pioneer — part of a small but growing group of middle-age adults with congenital heart disease who had surgical repair in infancy or early childhood.
“It’s hard for doctors to answer questions about how long I’m going to live. I ask, ‘Will I live until my 80s?’ and their response is, ‘That’s our goal.’”
Jennifer shares her lifetime of wisdom with parents and children affected by congenital heart disease.
Stay active and chase your dreams
“I loved taking ballet and gymnastics classes as a child,” she remembers. “Kids with heart conditions can love physical sports or arts and shouldn’t be limited or discouraged from pursuing them.
I wasn’t an athlete, but who’s to say I would have been if I had a perfectly healthy heart? You do what you can handle and it becomes part of your personality.”
Be intentional about your health
“At some point, you have to take over your own health care. Parents aren’t going to be there forever. Your doctors and primary care givers won’t be consistent, either; you have to learn to take care of yourself.”
Jennifer graduated from Regis College in 1991, went on to work in the Boston area and transitioned from her pediatric cardiologist to the Boston Adult Congenital Heart Program (BACH), a joint collaboration between Boston Children’s and Brigham and Women’s Hospital focused on the unique issues faced by adults living with congenital heart disease. Her primary doctors were Dr. Laurence Sloss and Dr. Michael Landzberg, who now directs the program.
Have a support system
“Looking out for yourself doesn’t mean you have to go it alone! I’ve often brought my parents or my brothers and now my husband Jim to absorb information and take notes in case I don’t catch everything. That person can be an advocate for you.”
Listen to your body
In May 2014, Jennifer, then 47, was getting ready for her wedding and felt what she assumed were run-of-the-mill, pre-wedding jitters. But when she still felt the rapid beating in her heart after her honeymoon, she decided to see her cardiologists … and discovered she was having atrial flutter. That meant abnormal electrical signals were circulating in the upper chambers of her heart. This causes the lower chambers to beat too fast, and the heart struggles to pump enough blood throughout the body.
Jennifer needed surgery urgently. Dr. Sitaram Emani re-routed the electrical pathways in her heart and performed multiple cardioversions (sending an electric shock to the heart) to help restore normal rhythm.
Trust your team
“Recovery was much harder than when I was 30,” Jennifer admits. (She had surgery to close an atrial septal defect, or hole in her heart, at 30.) “But it wasn’t awful! I had so much support from family, friends and the team at Boston Children’s; they gave me confidence.
“Dr. Keri Shafer, my primary cardiologist, and the whole group are always there when I call,” she says. “I carry all of their cards in my wallet. I haven’t moved from the area, and I tell my husband we never will! Half a century later, and I still haven’t cut the cord.”
A final note
“This is my normal,” says Jennifer. “I don’t know anything else. I don’t look at it like it’s a bad thing; I look at it as a blessing. You become more empathetic and able to relate to others’ struggles. Everyone has something, and the more you share your story with others, the more you realize how common it is.”
Learn more about the Boston Adult Congenital Heart Program (BACH).
Most people with congenital heart disease (CHD) are diagnosed at birth. But Dr. Kornelia “Nelly” Polyak found out about her condition in medical school.
After a lesson on cardiology, the teacher demonstrated an EKG on Nelly. Everyone was surprised by the abnormal result, and an echocardiogram confirmed that Nelly had CHD.
“I didn’t believe it at first. I was active, otherwise healthy, and felt fine — how could I have a heart problem,” says Nelly, who modestly describes herself as “more active than most people.”
Soon she learned she had an atrioventricular canal defect (ASVD), a hole in her heart that disrupted proper blood flow and also affected her mitral valve.
“It was pretty big,” says Nelly, “and I was warned my heart could fail before my 40th birthday if I didn’t have surgery.” …
Sylvia Noel Fagan
Administrative Associate, Cardiac Surgery
I’ve been here for 18 years — first in Cardiology and now in Cardiac Surgery. I’m the administrative assistant for Drs. Emani and Kaza, but I do a little of everything. With eight surgeons and four assistants, we all help each other out.
In person, I call some of the doctors by their first names — Ram, A.K., Francis … I like that. We have a great relationship. When I have a problem, I feel like I can really talk to them. In this department, we all care for each other.
I sit at the front desk, so I’m often the first person families meet. When they come in for a consult with a surgeon, of course they’re nervous. I try to calm them down and help out by distracting the kids. Sometimes it’s too much for a child to hear how a surgeon is going to operate, so I bring them out to color or play on my computer.
I always try to put myself in our families’ position. I had a mother call the other day, and the person she was looking for wasn’t available. I could tell she needed someone to talk to, so I stayed on the phone with her for a half hour, past the time I usually leave to go home. If I were calling and the person I needed wasn’t available, I would want someone to hear me out.
It’s a stressful time, so I always try to be calm. I’m the calm before the storm.