Jen Lentini was a 13-year-old competitive baton twirler and lacrosse player in the Long Island town of Hicksville, New York, when the problems began.
The pain started in her stomach. It was so severe that she’d often sit through a couple of classes then call her parents from the nurse’s office, asking to go home. Her grades started to slip. She didn’t hang out as much with friends.
She saw plenty of doctors; every appointment ended without any explanation for why she was hurting. They told her parents it was likely her “becoming a woman.”
“They really thought I was a typical teenager with typical teenage problems and everything was going to be OK,” Jen said.
Then she collapsed in pain during a lacrosse match. Her father, John Lentini, took her to the emergency room, only to hear the familiar refrain. The pain flared again in the middle of the night, prompting a return to the hospital. The same doctor told them to go home and see the pediatrician on Monday.
After a weekend of Jen suffering, the pediatrician sent them to another hospital. A doctor there suggested she might have twisted ovaries or appendicitis and recommended exploratory surgery. The surgeon removed Jen’s appendix, but she went into cardiac arrest and had to be brought back to life. Around 2 a.m., once Jen was stable, her parents went home because they needed to relieve a babysitter who was watching their 6-year-old son. They hadn’t been there long when the phone rang.
I’m doing the best I can, but I don’t think we can save your daughter, the cardiologist said.
“What the hell are you talking about? I was just there like an hour ago,” John recalls saying.
Jen was in heart failure. All along, the underlying problem was her heart. She had cardiomyopathy, a condition marked by her heart failing to efficiently pump blood to the rest of her body. To compensate, her heart worked harder, which led to it becoming enlarged.
Doctors at the local hospital stabilized Jen. They also determined she needed a transplant. She was transferred to a larger hospital in Manhattan to await a match.
“We called for last rites. We definitely thought she was going to die,” said Jen’s mom, Ellen Lentini.
As she waited, Jen needed an IV connected to her chest to deliver medicine around the clock. She couldn’t walk a foot without being out of breath. She used a wheelchair to get around.
Days turned to weeks and weeks became months. A teacher came for school lessons. The Good Humor Man and the Big Apple Circus came to visit. So did the Make-A-Wish Foundation, which tried to give Jen something to look forward to once healthy. Her wish was a trip to Disney World.
After a three-month wait, she got her new heart on July 6, 1996. She went to Disney World the next year.
On March 4, she turned 40. It was a stunning milestone for someone whose parents were told their daughter may not make it to 18.
“I really live life like every day is my birthday because I feel like we all should,” Jen said. “If I had fancy china, I’d be using it every day because I really do feel like every day is a gift.”
The medicine Jen has taken to ward off organ rejection has caused its own problems. She swelled up after taking the steroid prednisone and has medicine-induced alopecia. She describes her hair as “really non-existent,” so she wears wigs or hats, which she said is “a small price to pay for the gift of life.”
She also had kidney problems and has high blood pressure, gout and coronary artery disease. The latter led to having a stent inserted in an artery in December.
Still, nothing dents her appreciation for life – and for her “donor angel,” Matthew, a 14-year-old who loved to fish and dreamed of becoming a police officer. He died in a gun accident.
Jen met his mother on Valentine’s Day in 2015. The woman leaned her head on Jen’s chest to hear the heart beating, exclaiming, “That’s my boy!”
Because she was so young at the time of the transplant, Jen didn’t fully understand that someone had to die for her to have a second chance at life. Now, she shares her story to emphasize the importance of organ donation. She speaks at events and visits high school students to encourage them to become organ donors when they apply for a driver’s license.
Her first volunteer effort came soon after her transplant. She was invited to speak alongside Joe Torre, who was then the manager of the New York Yankees, and whose brother, Frank Torre – himself a former big-league ballplayer – received a heart transplant at the same hospital a few months after Jen. Frank Torre’s story played out in the headlines as he received his transplant while the Yankees were in the midst of beating the Atlanta Braves to claim the team’s first championship since 1978.
This July, Jen plans to hike a mountain in Phoenix with friends to celebrate her annual “re-birthday.” She likes the thrill of adventure and getting her heart pumping. One time she leaned off the side of a Manhattan skyscraper tethered by a harness.
“I love doing active stuff on my re-birthday because every time I feel my heart beat, I’m like, ‘Yeah, it’s still going. Let’s do this!’ and I have Matthew with me,” she said. “There’s nothing you can compare the gift of life to. You can have any gift you want, but the gift of health is the most important gift you’ll ever have. It’s priceless.”
Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.