Margarita Camacho, MD, thought she’d seen it all. As surgical director of the cardiac transplant program at association member Newark Beth Israel Medical Center, in Newark, N.J., she had been performing heart transplants for more than 20 years. But in 2017, one patient came to her with an unusual request.
“I have never had somebody ask me to give their heart back,” Camacho said.
After consulting with Mark Zucker, MD, another transplant surgeon, Camacho made a decision: If any patient were to have her heart back, it would be Lisa Salberg.
“She’s really reached out and connected and educated so many people with her disease that it just, in our hearts…”Camacho chuckled. “I hate to use that as a pun, it felt like the right thing to do, to let her have her heart back.”
Salberg had a purpose behind her unusual request. “I didn’t necessarily want my heart for me,” she said. “I wanted my heart as a teaching tool.”
At age 12, Salberg was diagnosed with hypertrophic cardiomyopathy (HCM), a genetic heart condition, at a school physical. After losing her sister to the disease at a young age, Salberg created the Hypertrophic Cardiomyopathy Association in 1996 to connect, educate, and advocate for patients. Since then, she’s traveled the country to develop centers of excellence for treating HCM and teach people about an illness that often goes unseen.
“From the outside, I always looked very normal,” she said. “We’re an invisible disease. People don’t always recognize that we have limitations and we struggle. ”
When Salberg’s heart began to fail and she needed a transplant, she did her research. A New Jersey native, she found one of the nation’s best transplant programs in her own backyard at Newark Beth Israel. Inspired by another transplant patient she met years before, Salberg decided to plastinise her heart. Through this process, the heart tissue is impregnated with plastic resin, preserving the organ and allowing it to be handled safely. Except for a slight color change, the heart looks and feels the same as it would otherwise.
“I teach people about HCM, I have dedicated my life to improving the lives of others with HCM, so how best to really explain what the disease is than to actually be able to look at it itself?” she said.
On Groundhog Day 2017, Salberg was admitted for a transplant, and on Valentine’s Day, she was discharged, taking her heart with her. After a lengthy plastination process at the University of Toledo, Salberg got her heart back, and has taken it to two educational events. “Now I get to teach people with my heart—pun intended!”
Salberg, who affectionately refers to her heart as “she,” said her new heart already has taught 100 people. “People understand what they see much easier than what they’re told in a hypothesis or on a grainy image on an echocardiogram, so my heart brings it to life,” she said.
In February 2018, Salberg took her heart back to the place where it all began — Newark Beth Israel Medical Center. In 2017, the hospital became one of just 12 hospitals in the country that have completed more than 1,000 heart transplants, a list that also includes fellow association members UCLA Medical Center and Tampa General Hospital. To date, Newark Beth Israel Medical Center has performed 1,024 transplants.
Recent medical innovations have helped heart transplants at Newark Beth Israel become more sophisticated, Camacho said. New pumps can keep donor hearts beating as they travel to the recipient hospital.
“In my opinion, that’s an outstanding way to preserve a heart, versus the usual way of throwing it in a cooler,” Camacho said.
Efforts to prevent heart disease also have improved in recent years.
“One of the key goals for heart health is prevention — healthy habits, healthy lifestyles, routine follow-ups with physicians,” Camacho said. “If you have a family history of heart disease…you need to get screened earlier.”
Salberg agreed: “Heart disease impacts all ages, genders and ethnicities, and we all need to be better at looking beneath the surface.” She hopes all states follow New Jersey’s lead in requiring a basic heart health examination for children.
“I want to make sure people understand what these diseases are, and that they’re real, and that just because you don’t look horrible or you don’t feel terrible on any given day, doesn’t mean you don’t have a disease,” Salberg said.
Neither woman shows signs of slowing down.
“People ask me, ‘how do you stay up all those nights and weekends?’” Camacho said. “It’s really because I do have a passion for it, and that’s what gives me the constant adrenaline pump in my body.”
Meanwhile, Salberg’s new heart is going strong, and she is grateful to the team at Newark Beth Israel for their lifesaving work.
“I went to Newark, and I walked out with a new heart and a new lease on life,” she said.