July 02, 2019
As Lance Barger lay in the cardiac intensive care unit at The University of Kansas Health System waiting for a new heart, he received some good advice from fellow heart transplant patient Brian Beggs.
"He told me, 'If you're layin', you're stayin,'" Lance says. "He said to be as active as I possibly can before and after the transplant because it will help with recovery."
Lance took the advice to heart. His heart transplant was October 15, 2018, in Kansas City. Six months later, in April 2019, he completed his first indoor triathlon at a gym in Wichita, his hometown.
"Doing any kind of cardio is new and exciting to me, and something I do a lot," he says.
A lifelong companion
Since birth, Lance, age 32, had lived with a genetic heart problem called hypertrophic cardiomyopathy.
"HCM causes an abnormal thickening of the heart muscle and can be limiting in terms of the person’s physical abilities," says his cardiologist at The University of Kansas Health System. "Thickening can keep the heart from functioning normally and disrupt the electrical currents."
HCM, the most common inherited heart condition, affects about 1 in 500 people and is prevalent in Lance's immediate family. Three of his older sisters also have HCM. The siblings inherited the HCM gene from their mother.
Lance's sisters had heart transplants in their 20s and 30s. And, like his sisters, as Lance approached age 30, HCM went from something he lived with to something that threatened his life.
Increasing symptoms of fatigue, vomiting and passing out put him in a local emergency room 4 times. Each time, he was sent home, discouraged.
Because HCM is underappreciated in the medical community, some hospitals and emergency rooms may not understand the severity of the disease.
The breaking point
"One night I was sleeping in the living room recliner because I could not breathe lying flat in bed," Lance says. "I felt sick and walked into the bathroom."
He collapsed, face first, breaking his nose on the bathtub on the way down. Kelcy, his wife, found him blue and unresponsive.
She called the heart care team at The University of Kansas Health System, where Lance had been a patient years before.
"We were so glad Kelcy called us," his cardiologist says. "The health system is a nationally recognized center of excellence for HCM and the only one in the region. We offer state-of-the-art prevention, diagnosis, treatment and research."
Affirmation, at last
Lance arrived by ambulance that evening and described his symptoms to his cardiologist. He was having heart failure symptoms related to his HCM condition and needed further evaluation.
"Kelcy and I just looked at each other. We were both about to break down because this was the first time a doctor had affirmed my symptoms," Lance says.
Kelcy and I just looked at each other. We were both about to break down because this was the first time a doctor had affirmed my symptoms. – Lance BargerHeart transplant patient
Under the health system's care, Lance was admitted into the cardiac intensive care unit, or CICU. While there, he underwent imaging, lab tests and evaluations from numerous specialists who concluded Lance was a priority candidate for heart transplant in Kansas City.
Lance and Kelcy heard the news the next morning.
The first 2 attempts to find a heart donor for Lance were rejected. One donor was elderly. The other donor had a history of cancer. Lance was crushed each time, but he understood.
On day 25 of his stay in CICU, Lance received news. He was told another heart was available but it was a high-risk heart, meaning the donor may have had a history of substance abuse or have been exposed to possible infections that could not have been proved under the time constraints of the donor heart offer.
"I asked the doctor if he or someone he loved needed a heart, would he be comfortable giving them this one? And, he said, 'Yes, without a doubt.'"
"The term 'high-risk' may have negative connotations, but most social characteristics of the donor don't affect heart pump function or donor viability," Lance's cardiologist says. "If the clinical team believes all the other donor heart characteristics are robust, then we encourage patients to accept the donor heart offer."
On October 15, 2018, Lance received his new heart.
"Absolutely every single person was incredible," Lance says. "Everyone was so good at their jobs. Dr. Andrew Sauer and his entire transplant team were absolutely phenomenal."
Today, Lance is a stay-at-home dad to his and Kelcy's 2 children, Annabel and Evan. He takes medications, including steroids, to reduce the risk of his body rejecting the new heart. While most patients eventually come off the steroid, Lance will be on the immunosuppressants the rest of his life, but most likely at lower doses.
Saying thank you
"I received a tremendous gift of life from a stranger and their family," Lance says. "I want to honor that gift by living the best life I can live, being as healthy and active as possible."
For Lance, the triathlon was a way to physically express his gratitude.
He messaged the transplant team for their thoughts about his participation and received a thumbs up.
"Lance is unique," his cardiologist says. "He had an exceptionally good and speedy recovery because he is young and worked very hard at becoming physically stronger. Not everyone is going to feel like doing a triathlon after heart replacement surgery. But we encourage patients to be active as soon as possible."
Lance has not yet personally thanked his donor's family, but he plans to write them a letter in October, the 1-year anniversary of his transplant.
Patient testimonial: As with all treatments, individual patient results vary. It is important to discuss your treatment options with your healthcare provider.