Emily Falkenstein, a Massachusetts native, has spent her entire life living with a congenital heart defect. This defect, known as anomalous left coronary artery from the pulmonary artery (ALCAPA), does not allow the heart muscle to get enough oxygen. The tissue then begins to die, which can cause a heart attack, as it did in Emily at only seven and a half weeks old. Beginning with that initial heart attack in infancy, Emily has received her care at Massachusetts General Hospital.
Emily's treatments include several catheterization procedures, a mitral valve implant, dozens of cardioversions and two ablations in adulthood and the most recent, a valve replacement at age 35. Over those many appointments, procedures and decades, Emily has developed strong and valued relationships with her caregivers at Mass General.
“I have a very vivid memory of all of my time spent in the hospital over the last 36 years,” she says. “I remember waking up from my first major surgery and seeing my teddy bear attached to my IV pole because the doctors knew IVs were hard for me, along with many other personal touches like a chocolate milkshake at midnight.”
A multidisciplinary care team of cardiologists, cardiac surgeons and nurses including Alan Goldblatt, MD, Richard Liberthson, MD, Doreen DeFaria Yeh, MD, Ami Bhatt, MD, Gus Vlahakes, MD, Duke Cameron, MD and Theofanie Mela, MD, have all been a part of Emily’s journey as a patient of Mass General. What Emily values most about this team is that they are just as confident in her as she is in them.
“When I feel like something is wrong, they never doubt me, and I never doubt them. I know they can find a way to fix it or to manage it,” says Emily.
Last summer, Emily underwent open heart surgery and was feeling better than she had felt in years. Although she had been encouraged to minimize cardiovascular stress for her entire life, she was determined to run a 5K.
With the support of her physicians, Emily completed the B.A.A. 5K last April, a mere eight months following her valve replacement surgery, and did not stop to walk once.
Emily knows that her valve will be replaced in the future, but she doesn’t allow that to stop her from doing the things she loves, like traveling, hiking and running.
“All of my conditions can be treated, but they cannot be cured,” she says. “But after each surgery, I will have a period of years where I feel this good, and I’m going to take advantage of it!”
Learn more about Mass General's Adult Congenital Heart Disease Program.