A New Jersey woman has found a unique way to raise awareness of her heart condition.
Hypertrophic Cardiomyopathy, a genetic condition, thickens the walls of the heart and disrupts blood flow in the body. If it goes undetected or mistreated, it becomes life threatening. Such is the case for Lisa Salberg of Rockaway Township, whose family has battled HCM for generations.
“I founded the Hypertrophic Cardiomyopathy Association in 1995-96 after the death of my sister Laurie. She had a sudden cardiac arrest due to mismanaged hypertrophic cardiomyopathy. I also lost my grandfather, my aunt, my uncle, and my father to the disease,” Salberg said.
Salberg’s HCM Association went from a small non-profit spreading awareness with the help of family and friends, to a network of doctors and patients that receive information and care through centers of excellence.
“We have 29 centers of excellence around the world and I’ve got six more in the works.”
Salberg admits that her own journey with HCM has taken a back seat to her work. All of that changed last September, when her heart stopped working properly and a transplant was necessary. With the mindset of a true CEO, she took it as an opportunity to spread her organizations message.
“I had always thought that if I passed away I would want my heart retained for science, but if I was going to be here anyway I might as well use that heart for something else. So I made some connections and I found a way to have my heart preserved with something called plasticy. It will take about four months for it to be ready for me. Once it’s ready I will actually be able to hold my heart in my hands.”
How unusual is this request? Dr. David Baron at Newark Beth Israel Medical Center helped choose a new heart for Salberg. He says it’s not so unusual, but it is a first.
“I’ve had many patients over the years ask for the defibrillator or pacemaker. And sometimes people have asked for pictures if possible of their old heart. But her case is extraordinary, to have a lot of foresight. She asked us this even before she added us to the transplant list,” Dr. Baron said.
Dr. Margarita Camacho is the surgical director of heart transplantation at Newark Beth Israel. She admires Lisa’s plans her old heart.
“I’ve known Lisa now for I don’t know, maybe not even a year, but this is so Lisa. She just really wants to do everything she can to make it better, to make her society better.”
Salberg says when she’s well enough, the heart will tour the country to raise HCM awareness.
“We started this project last summer and then I got sick and said wait we have to hold on, I can’t do the project right now I’m too sick. And now the project has slightly changed because I’ll be able to take the heart on the road,” Salberg said.
Salberg is about three weeks removed from her transplant and other than the expected pains that come along with major surgery, she says her heart is strong and her mind is clear.
“I have a beautiful 31-year-old donor heart. I don’t know anything about her other than she’s 31. I hope someday to meet my donor family, thank them, and give them the opportunity to hear their loved one’s heart beat again.”