From Fitness to Failure – And Back
As a twentysomething fitness instructor, it was admittedly a little disconcerting for Kristy Sidlar when she passed out in front of a class she was teaching back in 1996. She initially chalked it up to not having eaten enough, but she was soon diagnosed with an arrhythmia, given some medication and told not to exercise so much. “That is the kiss of death – to tell that to someone who loves to exercise,” says Sidlar, who is now 54.
Three years passed and Sidlar, true to form, was training for a triathlon when she experienced another episode; she was riding her bike to the gym to swim and run, but she never made it there. Fortunately, another cyclist found her fading in and out of consciousness and called 911 (this was before the age of cell phones). Paramedics were able to use defibrillator pads to bring her heart back to a normal rhythm. She later found out that her heart had been pumping an astonishing 280 beats per minute.
Sidlar learned that her initial arrhythmia had been misdiagnosed; in reality, she had a condition called arrhythmogenic right ventricular cardiomyopathy, or ARVC, a progressive disease that advances with exercise. Sidlar was allowed to continue working out, but she was cautioned not to let her heart rate get too high. “I have many stories of running when I shouldn’t have – especially the time I passed out while on the treadmill, flew off the belt and smashed into the mirror,” says Sidlar, who switched to lower intensity exercise to keep the progression of her disease at bay.
Fast forward 17 years to 2016, when Sidlar — who works as a salesperson in the recruiting industry — was living in Asia and traveling frequently for business. She noticed increased swelling in her feet and ankles on airplanes and felt short of breath walking through the airport with a suitcase. These were Sidlar’s first indications that she was entering heart failure. As her symptoms progressed to the point that she couldn’t complete a short walk around the neighborhood without stopping, her heart increased in size. “It was enormous,” says Sidlar. “It was the size of a small child’s head, spilling over into my right chest cavity.”
By 2020, the situation had become dire. Sidlar had since returned to the U.S., where she was evaluated. “One doctor in the room said, ‘I do not know how this woman can walk down the hall with a heart this size,’” Sidlar recalls. The transplant team unanimously recommended she be added to the transplant list.
Sidlar was scheduled to be put on the list on March 10, 2021. Five days before, she went into arrhythmia for an entire weekend. When defibrillation was unsuccessful at restoring a normal rhythm, she was fast-tracked onto the transplant list. On the same day that she was originally supposed to be added to the list, she got a call that a heart was available. The next morning, March 11, 2021, Sidlar received her new heart at the Henry Ford Health System in Detroit. “It happened really fast,” says Sidlar.
The donor was a 37-year-old woman; at the time, Sidlar was 52. “I don’t know any more about the donor but would like to,” says Sidlar, who was written to the donor family but has yet to hear back.
Sidlar’s recovery was fast: whereas some transplant recipients stay in the hospital up to two weeks, she was discharged after eight days. She did contract cytomegalovirus, a virus that some transplant recipients get, which landed her back in the hospital. But three months post-transplant, Sidlar was already lacing up her running shoes.
To make sure that their new heart is functioning well, it is standard for heart transplant patients to get regular biopsies. A catheter is threaded through the jugular vein, and a few pieces of tissue are snipped. Sidlar tolerated those biopsies well (she’s endured 20+!), but she prefers CareDx’s HeartCare tools that provide a noninvasive assessment of the potential for graft rejection — AlloSure® Heart, a simple blood test that detects graft injury and rejection, and AlloMap® Heart, a different blood test that looks at the expression of certain genes to assess immune quiescence. More than 90% of transplant centers use AlloMap.
“I still need a biopsy once a year, but for the most part, HeartCare is replacing the regular monthly biopsies,” says Sidlar.
During the first year after receiving her new heart, Sidlar wrote a book about her journey including what she refers to as her “wellness widget,” which highlights six dimensions of wellness: physical, social, emotional, spiritual, financial and vocational. “I believe if we pay attention to these six dimensions, we will live better lives,” she says. Her memoir, Change of Heart: My Journey of Transplantation, Revelation and Transformation, launched on an auspicious day: March 11, 2022, the one-year anniversary of her new heart and her new lease on life. She uses her story to inspire corporate, civic, and non-profit audiences.
Note: Kristy has received compensation from CareDx for providing speaking services