Heart & Soul

If you find yourself newly diagnosed with heart disease in the Kansas City area, Marie Burden might pay you a visit. Burden, 56, has been there. At 36, she was told she had heart disease. At 48, she had a heart transplant. So when she makes hospital rounds to meet women with heart disease, she speaks from experience.

She recently met a 35- year-old woman who doesn’t think she needs a transplant. Burden, who lives just outside Kansas City, Kansas, in Leavenworth, recognizes the denial. “When they told me I needed a heart transplant, I didn’t believe them. They asked me why and I said, ‘Have you ever heard of Tuskegee?’ “

At 36, Burden was a “perfect size 8.” On a trip with her husband she couldn’t get into a pair of jeans she’d worn a few days earlier. After climbing a flight of stairs, she started coughing and couldn’t stop. Later, she found out the swelling was caused by edema, the pooling of fluid in the body caused by the heart’s inability to keep blood moving.

She also learned she had a congenital heart murmur and cardiomyopathy. At 44, she had her first cardiac arrest and had to be shocked three times to be revived. Doctors implanted a defibrillator that day. Three years later after the implant she had three heart attacks in one day. The defibrillator saved her life. “It dawned on me that something was really wrong because I kept dying,” she says.

She waited 10 months for a donor heart and spent five of them reconciling with her need for a transplant and the changes heart disease had made in her life. After the transplant, she tried to find the donor’s family to thank them, but the family couldn’t be found. “I want them to know the organ wasn’t wasted and how much living I’m doing.”

Before her heart failed Burden had never given a thought to organ donation. Now she’s a staunch advocate. In addition to her hospital visits through the Pathways to Purpose program at St. Luke’s Hospital in Kansas City, she is a national spokeswoman for WomenHeart, the only national advocacy group specifically for women with heart disease. Her desire to give back to her community and her gratitude to her donor drive her to look heart patients in the eye, tell her story and help them adjust to their illness.

“It’s like I got some money from a bank and now I want to pay it back,” she says. “What better way than to give back to my people?”

–Nichele Hoskins