Susan’s first symptom of a heart problem was a Sudden Cardiac Arrest in her driveway as she was getting ready to leave for work in 2015. It took over three years to figure out what caused her Sudden Cardiac Arrest.

“I was in a coma for four days after my SCA,” says Susan. “Testing during that time revealed that my ejection fraction was 5% when I got to the hospital.”

After her Sudden Cardiac Arrest, she went to two specialists – who told her that she was in heart failure. “I hadn’t had a single symptom of a heart condition – and certainly not any indication that I was in heart failure,” she says. Her first two specialists believed her heart failure was caused by a virus – but Susan got a third opinion at Mayo Clinic, who told her it was not related to a virus.

“Always advocate for yourself,” she says. “If you’re not getting answers, don’t be afraid to ask for another opinion.”

After her first cousin also experienced Sudden Cardiac Arrest, Susan started to suspect her heart issue might have a genetic component. Although she’d had genetic testing shortly after her own SCA, nothing came back as suspicious – on her genetic testing results. But when her genetic testing panel was expanded, her test came back positive for a variant of uncertain significance in the DSP gene. After a trip to Johns Hopkins, it was confirmed that she had Arrhythmogenic Cardiomyopathy, which is left-sided in Susan’s case. Retesting her children revealed that two of her three kids also have the mutation.

Nine months later, Susan received a heart transplant. “It was a huge shock that I needed a heart transplant,” she says. “I felt and looked completely healthy the day before my SCA, only to learn I was in heart failure. After being put on the list, waiting for the heart was difficult – I didn’t know when the call was going to come.”

The recovery after her transplant was a long process, with several complications, but Susan is very grateful for her new heart. “It’s amazing what medicine can do,” she says. “My quality of life has gone way up.”

Susan urges everyone to keep in mind that you can’t always tell by looking at someone what their health is like. “You can’t see someone’s heart from the outside,” she says. “And remember that transplant is a treatment, not a cure. There’s a lot that goes into living with a transplanted organ.”