It’s a ‘roll of the dice’

Jennifer Lentini needs second heart transplant

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Jennifer Lentini, 33, of Franklin Square, recently began having trouble breathing, and felt unusually fatigued after climbing a flight of stairs.

Since Jan. 30, Lentini has been undergoing treatment at New York Presbyterian Hospital in Manhattan, having been told that she needs both a new heart and a new kidney. And this will be her second  heart transplant. 

In July 1996, at age 13, Lentini, who had heart disease, had her first heart transplant. Her heart came from boy in Fulton, N.Y., named Matthew McIntyre, who was 14 when he died in a shooting accident. She needs another transplant now because her second heart is also beginning to fail, and is rejecting the drugs she takes to ward off infection. And one of her kidneys is having difficulty filtering the blood pumped from her heart and fighting off infections.

According to the organ donor program Long Live N.Y., New York state "ranks 50th out of 50 states with regard to the percentage of residents registered as organ donors, and ranks third in the country in people waiting for organ donations." Other states may provide better opportunities to locate donor organs, but those efforts bring the expense and the risks of travel. 

"I'm OK as can be with this situation," Lentini said. "I want people to realize that because of New York state and my particular blood type, which is O-positive, I'm at the bottom of the list for a transplant. It's very hard to get on the donor recipient list."

She added that she had already spent three weeks trying to get on it. The wait time, she said, would most likely be six months to a year for both a heart and a kidney.

The hardest part, said her father, John Lentini, would be reliving the experience of her first heart transplant - when she was also treated at New York Presbyterian.

"It's very frustrating and depressing," he said. "Nobody wants to see their child go through something like this, suffering. I used to leave for work in the dark in the morning, leave work at night, and check in on her every day. In taking the subway from home after work and visiting her, sometimes I'd be so exhausted I'd fall asleep on the train and end up missing my stop, ending up at different train stations. With the organ donor process, it really is a roll of the dice, and depends on where you land." 

His daughter, a bartender at Coasters Tavern in East Meadow, said she is just trying to persevere until she gets her new organs. Before she got sick, she traveled all over New York and New Jersey as a public speaker, addressing crowds large and small, talking about her life and the importance of organ and blood donation. She also maintained her cardiologic health through walking, tennis and Zumba, and kept to a heart-healthy diet of low sodium and fresh fruits and vegetables. 

"When I first got here, it was a lot to handle," she said by phone from the hospital. "... I just try to stay as positive as I can be. I live hour by hour, not day by day. I've been trying to just focus on that."

At New York Presbyterian, she said, she finds ways to stay stress-free. "Some days I have multiple visitors, and other days, nobody," she said. "I can wear a mask to go outside. I also have coloring books, and TV. I love my walks outside most."

A friend of hers, Danielle Ansbro, said she admired Lentini's strength and courage in her fight to get new organs. "Through all of this, Jen is the most positive and uplifting person you'll ever meet," Ansbro said. "It's been tough. She seems to be in good spirits, though. She did a Skype event [to raise awareness of organ donation] last week but is very tired."

Her family and friends set up a fundraising website to assist Lentini and her family with expenses, setting a goal of $30,000.

"Please help us help a dear friend of ours by helping to raise funds to assist with the astronomical costs associated with these procedures," the website reads. "Unfortunately, insurance does not cover all the necessary treatment and travel expenses. Therefore, in order for her to receive the most optimal level of care and treatment for her condition, Jen is depending on our support."

For more information about organ and blood donation, visit www.livelong.org or www.redcrossblood.org. To donate to Lentini, visit her website, https://www.gofundme.com/9ygdtv-jens-medical-funds