As cousins and close friends, Kari Melum and Kristie Star have many things in common: a shared love for farmers markets and shopping, names that start with K, and a genetic mutation that causes a type of heart failure. Known as hypertrophic cardiomyopathy, this disease gave them another shared experience. In 2017, the women received heart transplants within months of each other at Froedtert & the Medical College of Wisconsin Froedtert Hospital.
Kari, 42, and Kristie, 43, were initially diagnosed after a series of tragic losses when they were children. In 1987, Kari’s sister and Kristie’s brother, both age 15, suddenly collapsed and died within a few months of each other. In the aftermath, Kari and Kristie, then 11 and 12, learned they had hypertrophic cardiomyopathy, a disease that tends to run in families.
The disease causes heart cells to enlarge, making the walls of the heart abnormally thick and limiting its pumping ability. The thickness can disrupt heart rhythms, increasing the risk of sudden cardiac death.
Kristie’s Path to Transplant
By the time Kari and Kristie were young adults, both had defibrillators implanted. These small devices monitor cardiac rhythms and can provide a shock to the heart in case of cardiac arrest. But each woman had a different journey to heart transplant.
Kristie’s began in April 2017 when she felt ill with mounting fatigue and nausea. Her boyfriend brought her to a local emergency room. Her brother Kirt, who also had hypertrophic cardiomyopathy and received a heart transplant at another hospital in 2009, met them there. Seeing Kristie’s state, he insisted she be transferred to Froedtert Hospital.
At Froedtert Hospital, doctors diagnosed Kristie with heart failure. In intensive care, a catheter was placed in the pulmonary arteries in her neck to monitor lung pressure and declining heart and kidney function. She received IV medications to strengthen her heart’s pumping ability.
Kristie’s case was brought to the Froedtert & MCW transplant team’s weekly meeting, which includes advanced heart failure and transplant cardiologists, cardiothoracic surgeons who specialize in heart transplant, and an array of other specialists.
If patients meet criteria for transplant, they are added to the national organ wait list. Based on medical urgency, a status is assigned to each patient. Given Kristie’s condition, she was listed as 1A, or highest priority. Less urgent cases receive a 1B or a 2.
Kristie waited three months for the right heart. Considerations including size, blood type and distance the donor heart needs to travel are evaluated with each available heart. Given her worsening health, it was a difficult time. “Every morning I’d wake up and ask, ‘Do I have a heart?’” Kristie said. Some days she felt like giving up, but it helped to have the support of her boyfriend, family and medical team, including advanced heart failure and transplant cardiologist and MCW faculty member Nunzio Gaglianello, MD. “He knew I was frustrated, but he was always there for me,” she said.
On July 28, Kristie learned the right donor heart was finally available, and transplant surgery was performed that day.
Her recovery was slow, in part because she was so weak at the time of surgery. But she was no longer alone in the hospital. A few days after Kristie’s transplant, Kari was admitted to await her own transplant.
Kari and the Elephant on Her Chest
Kari had a longer relationship with Froedtert Hospital and a slower journey to a new heart. The process started about five years ago when she returned home after work one day and told her husband, Lee, that she felt sick.
“I felt like an elephant was sitting on my chest,” she said. They visited an area hospital and found she was in congestive heart failure. Kari felt concerned she was not getting the most advanced care, and her mother-in-law recommended she call the Froedtert & MCW Hypertrophic Cardiomyopathy Program. There, she saw cardiologist and MCW faculty member Joshua Meskin, MD, who referred her to the advanced heart failure team.
Kari eventually needed milrinone, administered intravenously at home through a catheter, or PICC line, in her arm to control the heart contractions. Kari’s care team updated her heart transplant list status from 2 to 1B.
After about a year of IV medication, Kari developed a medical complication, increasing her transplant need. She was admitted to Froedtert Hospital in August 2017 and boosted to 1A status. She was eager to visit Kristie in the hospital, but doctors asked Kari to keep her distance, given her infection and Kristie’s vulnerable post-transplant state. “We were limited to FaceTime for a while,” Kari said, but in time Kristie was moved to the room next door.
Unlike Kristie, who was largely immobile while awaiting transplant, Kari was well enough to alternate IV treatments with walks around the hospital. She appreciated her care team, who took time to stop in for regular conversations, and the multidisciplinary approach to care made her feel like she was in good hands.
“Four heads are better than one,” she said. After three months of waiting, a donor heart became available, and members of the Froedtert & MCW transplant team led Kari’s transplant on Nov. 6.
The Road Back to Health
After they were discharged in fall 2017, Kristie and Kari began attending a cardiac rehabilitation class three days a week close to home at Moorland Reserve Health Center in New Berlin, led by Lauren Waraxa and Krista Roob, exercise physiologists, and Martha Gatchel, RN. The class taught the women about post-transplant life and guided their exercise program, which involved riding a stationary bike and walking on a treadmill, slowly building their endurance and confidence.
“Our goal is to get patients comfortable with exercise and develop it into a habit to keep their hearts healthy,” Waraxa said.
She added that Kristie and Kari provided valuable support to one another and other cardiac patients. “They’re both amazing women,” Waraxa said. “Their attitudes are so positive. They’ve probably been through more than most, but here they are working to return to the activities they love.”
Doctors continue to monitor Kari and Kristie closely. The cousins are doing well and their strength is returning. “I’m grateful to the Froedtert & MCW doctors and staff,” Kristie said. “It’s nice to get back on my feet and to not have to worry about what my heart is doing.”