Family and friends of a 16-year-old Fort Lee youth, who received a much-needed in June and is now in the midst of what is likely to be a lengthy recovery, are planning a fundraiser they hope will also help raise awareness about the importance of organ donation.
Johnny Damato was born with a rare congenital heart disease called Corrected Transposition of the Great Vessels and needed a heart transplant.
In mid-June, Johnny’s family learned that the then 15-year-old—he turned 16 on June 21—would receive the heart he so desperately needed, when they received a phone call that one had become available.
A 10-hour surgery at Mount Sinai Hospital followed the next day, June 13, and slightly more than two months later, Johnny is going through what his mother, Rita Damato, called “cardiac rehab.”
“He’s hanging in there,” Damato said of her son. “But afterward he had several complications.”
At first, Johnny’s new heart wasn’t beating the way it should have been, but Damato said a pacemaker seems to be helping that get “a little better” over time.
He also experienced Atrial flutter (AFL), which causes the heart’s atria to beat faster than the ventricles and had to be treated with Cardio Conversion, which Damato described as “like a shock.”
And then there are the medications; Johnny is forced to take a virtual litany of them.
He needs the medicine to prevent his body from rejecting the heart, but they result in conditions like acne, which he’s never had, and extreme puffiness caused by steroids, according to his mother.
“It’s just a wait-and-see and a wait-and-watch game,” Damato said. “The medications that he takes—there’s so many of them—they really wreak havoc with your system.”
After Johnny got out of the hospital, he had to go to the doctor every week for cardiac biopsies. That became every other week, and now he only has to go once a month, Damato said.
“He’s getting a little bit stronger,” she said. “Now he’s just started actually getting out and walking and doing a little bit of cardio-vascular activity. It’s all toward the cardiac rehab.”
Doctors have told the family that the first year is critical, but beyond that, they can’t really tell them anything definitive, according to Damato.
“The anticipation is that everything will be fine, but there’s just no way of knowing, she said. “An infection could just knock him on his [butt].”
Damato said the mother of one her daughter’s friends is taking the lead on planning a fundraiser, which they hope to hold at the the second week of October. Beyond things like raffles and 50-50s, plans are also in the works for the event to include organ donation signups, as well as blood and bone marrow donations.
“They can do all of that and make it an awareness day as well as a fundraiser,” Damato said.
Patch will provide more information on the fundraiser when it becomes available. In the meantime, you can help by donating through the website, Hope for Johnny's Heart.