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.
Heart failure support group members, seated from left, Ollye Johnson of Jackson, Lottie Wells of Clinton and Beulah White of Jackson enjoy each other's company.
At the group's 200th meeting, members celebrated with mini cupcakes, fruit and other treats. But, they also celebrated the lives of 10 group members who have died since that first meeting, some of heart failure complications, and some of other health woes. “Isn't it fun to think about our friends?” Schott asked the group. “That never, never goes away!”
Harold Mayberry of Jackson has coped with congestive heart failure since 2005. In fall 2013, when Mayberry's condition was end-stage, cardiothoracic surgeons at UMMC implanted a left ventricular assist device, known as LVAD, into his chest.
Sixty-year-old Mayberry got his life back, and he hopes a heart transplant will end his need for the pump device that takes blood from his bottom left heart chamber and pushes it through to his aorta. “It could happen in the very near future,” he said of the surgery.
Peter Green, left, and Harold Mayberry, both of Jackson, enjoy a speaker at their heart failure support group meeting.
The support group, which meets on the first and third Wednesdays of the month, “has been like a class to me,” Mayberry said. “I get encouragement that just because you have heart failure, your life has not ended. I go because I know I'll learn something from it, and it's good that I have people there that I can relate to. When this thing first started with me, I thought I was out there by myself. But, I've found that is not so.”
The support group “helps me not to feel like I'm chronically ill,” said Lottie Wells of Clinton, 79, who was diagnosed with congestive heart failure in 1993. “It's a place where you can release. I find happiness there.”
The camaraderie with fellow patients, Wells said, is invaluable. “I don't like missing,” she said of their gatherings. “There are times that I do miss, and when I come back, I feel like they're my family. It's just a great help to my life.”
Just because a heart failure patient looks great doesn't mean they're not battling multiple health problems, Schott said. They need to be aware that in the midst of enjoying life, they should keep close tabs on their health. “You have to go with the flow of your own body,” she said.
“In this group, you get the courage to stay alive,” Schott said. “You get the courage to call the doctor when you need to, and the courage to call an ambulance rather than driving yourself to the hospital.”
Schott leads the support group as members Jerry and Lewis Jones of Lena listen.
Schott nurtures the only patient-led heart failure support group in Mississippi, Freeman said. And, there's plenty of room for more members; to inquire or register, call 601-815-1304. It's open to all heart failure patients, not just those seen at UMMC.
Wells has a message for prospective members.
“It's not like you are fighting the battle alone,” she said. “Someone else in the group is craving salt. Someone else there enjoys fried food, but we know we can't have it. Now, every once in a while, we'll break down.
“It's really encouraging when everyone shares at our meetings. There have been some who have told me I've been a help to them, but I know each one of them has helped me.”