The HeartLife Foundation was established in 2016 when two heart failure patients determined that there needed to be a dedicated advocacy group, led by patients, for those living with the chronic illness. Those two patients are our founder and president, Jillianne Code, and our co-founder and vice president, Marc Bains.
After a series of tests and misdiagnoses in Jillianne’s case, the initial shock of being told they had heart failure was felt by both. Marc’s first question to his doctor was: “Am I going to die?” And when Jillianne’s cardiologist said she knew what do to do about her diagnosis, her first feeling was “relief” – she was just 28 years old at the time.
HeartLife member, Tracy Bawtinheimer, says her first assumption was that a “solution” would come with her diagnosis, and that she didn’t realize what “chronic” was until her disease “reoccurred, and reoccurred again.”
Living with heart failure doesn’t have to mean that you can’t do certain things like work out, play sports, or travel, but it does mean you have to do them differently. Marc notes how it limited his travelling, but he can now continue to go on trips once he knows that “an environment is safe” for him to visit and that medical services are within reach.
“I used to commute to work by bike, pretty aggressively,” says Tracy. “Now, we ride on paths, take breaks, and enjoy the scenery.” Despite Jillianne’s diagnosis with heart failure, she fought on to continue her PhD studies, and even though she was getting work to do in her post-doc, she continued on to get her professorship.
Nick Zap, Jillianne’s husband, says that when it comes to living with heart failure, he and Jillianne fully “embraced” it. Although Jillianne had physical ailments, “there was nothing there stopping her from continuing on with life.”
Jillianne says that when you’re diagnosed with heart failure, “you think your life is over.” But what it really does is teach you to “slow down”. Today, she calls living with heart failure a “new, extraordinary life.”
“You have to be patient and find alternative solutions to what you want to do,” says Marc. “Embrace moving forward with what you’re doing, there’s going to be tweaks, there’s going to be tough times, but at the end of the day, you still need to live,” adds Nick.
Marc reinforces the fact that there are resources out there, and that “there are people like you living with heart failure,” but you have to keep moving forward. He believes that in order to do that effectively, “we need to work together” and “strengthen our voice.”
For Tracy, living well with heart failure means being active and finding a way to incorporate the things you love to do into your new life. “I think it’s really important to remember that you’re never alone in this. I’ve been fortunate to find the HeartLife Foundation, benefit from the online support group, and the information that they have to share,” Tracy concludes.
