Jess Minot: Genetic Heart Disease. Survivor. Fighter.

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Just this one time, Jess Minot didn’t want to follow in her mother’s footsteps. But when she turned 18, she was diagnosed with dilated cardiomyopathy, the same condition that ended her mother’s life a decade earlier at the age of 29.

“We know my heart disease is genetic,” says Jess, now a nurse at the Hospital of the University of Pennsylvania.




A deadly family disease discovered

The family’s story starts with the birth of Jess’ older sister, a seemingly healthy baby who came down with what appeared to be a rapidly developing cold at 3 weeks old. She was rushed to the hospital, where her parents learned she had a congenital heart defect. She soon passed away.

“I never got to meet my older sister,” Jess says. “And unfortunately for my family, my sister’s heart disease was just the beginning of our story.”

After the death of their first child, Jess’ parents, Elaine and Michael, had two more children: Jess and her older brother, Andrew.

Soon after Jess’ birth, Elaine was diagnosed with peripartum cardiomyopathy—the stress of pregnancy was causing her heart to fail. Three weeks postpartum, Elaine needed a heart transplant. But that heart lasted only a short time. “I was three years old when my mom needed a second heart transplant,” Jess recalls. “Unfortunately, the second transplant only lasted another few years. My mom died when I was 7 years old.”

Following her mom’s death, doctors knew there was a chance Jess had inherited the same condition.  Each year she went to The Children’s Hospital of Philadelphia for a checkup and an echocardiogram (also known as an Echo, or ultrasound of the heart) to monitor her heart. At 18, her yearly echo showed that her heart had doubled in size since the previous test. She was suffering from the same disease that killed her mom and older sister.

“I was told that I would never be able to drink alcohol, and that I needed to monitor how much sodium I was consuming. They said that daily exercise was a must to keep my heart from getting worse,” Jess says.

Jess’ brother Andrew, meanwhile, learned unexpectedly, while being evaluated for a broken collar bone, that he too had the same condition. He died shortly after, at the age of 24.

Staring down her fate

Following her brother’s death, Jess resolved to do everything in her power not to suffer the same fate as her mother and siblings. She started following her doctor’s orders very seriously.

“After I turned 21, I was transferred to the care of Penn Medicine’s Dr. Mariell Jessup at the Hospital of University of Pennsylvania,” says Jess. “She asked me if my mother’s name was Elaine. It turns out Dr. Jessup was on the medical team that cared for my mom 20 years earlier.”

Dr. Jessup reinforced the gravity of the situation that Jess faced. The doctor told Jess that if she didn’t follow the strict guidelines set out, she may suffer her brother’s fate. “The news was devastating. I just wanted to be a normal college kid,” Jess recalls, “But Dr. Jessup gave me the tools I needed to stay healthy.”

Rewriting family history

Today, at 26, Jess is nearly the same age as her mother when she passed away. Thanks to the expert care of Penn Medicine, Jess has not only survived—she’s thrived.

“Since coming to Penn, my ejection fraction, an important measurement in determining how well your heart is pumping out blood, has doubled,” boasts Jess. “I credit my health not only to my adherence to a healthy lifestyle, but also to the advances in science and medicine that have occurred since my mom passed away almost 20 years ago."

“I recommend Penn to anyone with heart disease,” she continues. “Penn has world class research, new innovations, and the newest therapies for all kinds of heart problems.”

To read and hear more inspirational stories, visit Penn Heart & Vascular on the web or on facebook.

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