When she was born, Heather Lister had a heart murmur. At 28, she also learned she had a bicuspid aortic valve — a common congenital heart defect where the valve has two tissue flaps, or cusps, rather than the usual three.
After Heather received the diagnosis, the Jacksonville, Florida, real estate agent had regular cardiac checkups for years without issue. Many people with a bicuspid aortic valve aren't affected by valve problems until they're adults, and some may not be affected until they're older adults.
When she turned 40, Heather — who went to the gym at least five days a week — began noticing some changes. "I felt tired. I couldn't catch my breath. I just didn't feel right," she says.
Heather's community cardiologist told her everything was fine, and advised her to come back for another checkup in two years. Still uneasy, Heather called Mayo Clinic for a second opinion. In November 2016, she met with Carolyn Landolfo, M.D., a cardiologist who specializes in women's heart health.
She soon found out that her decision to get a second opinion would have lasting repercussions.
At Mayo Clinic, Heather learned that in addition to having a bicuspid valve, there was another problem. She had an enlarged aorta and was at increased risk for aortic dissection.
"Some patients who have bicuspid valve also have an aortic aneurysm, an abnormality where the aorta becomes enlarged," says Dr. Landolfo. "This can result in layers of the aorta becoming weak and prone to either tearing or rupture — either of which can be catastrophic."
Heather, a mom of two teenagers, was shocked. "No one had ever mentioned a connection between the valve and the possibly of aortic aneurysm. I was terrified … for my aorta to rupture when I'm home alone with my kids."
Research indicates there may be a genetic connection to the condition. Heather realized that several members of her family had died suddenly from cardiac events. Dr. Landolfo suspected they had the same condition. That information, coupled with Heather's individual circumstances, called for a more comprehensive evaluation.
"Current guidelines indicate surgery for patients with aortic aneurysms measuring 5 centimeters or more. They do not index for body size," Dr. Landolfo explains. "Heather is petite, and although her aneurysm was smaller — about 4.5 centimeters — it was big for her body size. I was not comfortable, knowing her family history."
Dr. Landolfo assembled a collaborative team to work with Heather. It included Medical Genetics, as well as Naser Ammash, M.D., a congenital heart specialist, and Alberto Pochettino, M.D., a cardiac surgeon.
"We don't want to operate before the right time, but we don't want to wait until it's too late," Dr. Landolfo says. "We had to come up with a plan to individualize her care."
In September 2017, Heather flew to Mayo Clinic's Rochester campus for surgery to repair the aorta. Because her valve was in such good condition, she didn't need to have it replaced. While Heather will continue to have her valve monitored, the hope is that she will not require additional treatment for at least another decade.
"Mayo Clinic has given me back my life," says Heather, who rang in 2018 in New York City with her family. Since then, she's marked several other memorable milestones. In February, Heather and her husband celebrated their 22nd wedding anniversary with a trip to the Bahamas. In May, she watched her son graduate from high school.
Today, Heather is back at work and back in the gym three to four days a week. "I finally feel like I'm back to who I was a couple of years ago," she says.
The experience, she adds, has made her even more of an advocate — not just for Mayo Clinic, but for listening to your body. "When I came to Mayo Clinic, I felt like I was listened to and understood. And I think it made all the difference in the outcome."
Learn more about Heather's story in this video: