People with heart failure have to learn how to remember their meds.
They have to learn how to conserve their energy. They have to understand that fatigue is hard on their body, and how to describe fatigue to their families in a way that they'll understand.
But mostly, “you learn about how you want to live to stay alive,” said Sallie Schott of Jackson, a 19-year heart failure patient at the University of Mississippi Medical Center. “It's a decision to not miss life.”
Schott leads a twice-monthly heart failure support group that empowers patients with the information and encouragement they need to be as healthy and happy as they're able. The group, which meets twice monthly from 10-11:30 a.m. at the University Physicians classroom on the UMMC campus, recently celebrated its 200th gathering.
An artist who also crafts jewelry, Schott has made it her mission since the group first met in 2008 to help heart failure patients come up with their own solutions to problems caused by their chronic condition. A virus caused the 72-year-old to develop idiopathic congestive heart failure.
“Nobody thought that I would last this long,” she said. “I needed to learn everything I could to stay alive.”
About a decade after her diagnosis, Schott said, she began pushing for creation of a support group at UMMC. “I rabble-roused,” she remembered. She agreed to lead it.
“She knows how it feels to have heart failure, and understands on a personal level the struggles that patients are experiencing,” said Patricia Freeman, a registered nurse and manager of clinical outcomes and analysis for University Heart. “That's very powerful.
“Sallie knows the questions and shares the answers that she has received from her physicians and nurses,” she said. “Patients are scared when they have heart failure, and they know absolutely nothing. An office visit won't satisfy all their questions, and frankly, patients don't always know what to ask.”
“Your doctor has not lived the way you do,” Schott explains.