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Sandy Malay has never been a “sitter.” So, when the 59-year-old considered the prospect of lying in a hospital bed for up to a year while she waited for the gift of life with a heart transplant, she was not happy with the idea.
Yet, that was the decision she faced in summer 2020 when she learned her heart disease had gotten worse. She had already been on the wait list at her transplant center for two years and didn’t know how much longer she could continue to wait. So, she followed the advice of her brother, Mark Graff, and looked into the possibility of being listed at a second transplant center—the UW Health Heart Transplant Program in Madison, Wisconsin.
Within a few weeks of being placed on the wait list at UW Health, Sandy received the call she had been awaiting. On September 7, 2020, she underwent surgery to transplant a new heart into her body. “I’m just so lucky,” she says.
A family affair
Sandy and three of her five siblings all have the gene for hypertrophic cardiomyopathy, a disease that makes it harder for the heart to pump blood to the rest of the body. They all were tested in the early 1990s after a cousin learned she had the gene. But Sandy, who was in her 20s at the time, already knew she had heart disease and was under a doctor’s care. Over the years, she did fairly well and didn’t start taking medications until 2006. She received a defibrillator in 2011, and gradually, her fatigue started to decrease her quality of life. Sandy was working long hours and traveling each week as a regional manager for Kwik Trip and couldn’t keep up with the hectic pace of her life, so she stepped down to a different position in 2018. “I was really, really tired,” she says. “My heart just could not keep up with the hours and traveling.”
By 2018, Sandy’s doctors at the other transplant center put her on the wait list for a heart transplant, but they warned her she might be waiting several years. In the meantime, Sandy’s brother Mark moved quickly through the transplant process: He was put on the wait list for a heart at UW Health in March 2020, and by May, he received the gift of life. He recommended that she pursue dual listing, which means being listed at two different hospitals simultaneously. After Sandy’s heart disease became worse in summer 2020, she agreed and began talking to staff at UW Health. Sandy went on the list in August 2020 and received her new heart in September.
Why was Sandy’s wait in Madison so much shorter than her wait at the other center? UW Health is one of just a few transplant centers involved in a trial study on the use of donation after circulatory death (DCD) hearts. As part of the process, organs are retrieved from a patient after his or her heart stops. Health care professionals then perfuse the heart in warm blood and are able to assess the organ’s viability, essentially “reanimating” it for use in another person. The study has the potential of radically increasing the number of donor hearts that are available and saving more lives.
Sandy was thrilled she was able to receive a second chance at life with her new heart. “I’m going to take care of this heart as if it were my child,” she says. “I call it ‘Miracle.’ When I’m going through cardiac rehabilitation, I will talk to it, encouraging it to keep on going.”
While her other two siblings with the gene have not yet reached the point of being listed for a heart transplant, they have switched their care to Madison and are now seeing Maryl Johnson, MD, FACC, cardiologist at UW Health and the same doctor who treats Sandy and Mark.
“I feel very comfortable with the team at the UW Health Heart Transplant Program,” says Sandy. “The doctors and nurses very much care about you and listen to anything you have to say.”