Last year the Beacon told the story of 24-year-old Kayla Gilbert, a Warwick resident with cystic fibrosis who was in need of a second lung transplant. Gilbert underwent her first transplant in 2008, and now her body is rejecting the set of lungs she received in that nine-hour operation four years ago.
Gilbert and her family have since relocated to North Carolina in order to be close to the Duke University Hospital and their Lung Transplant Program. Because of Gilbert’s unique situation – an overabundance of anti-bodies from her first transplant and a small ribcage – finding a set of lungs that matches her blood type and physical build has proven tremendously difficult.
Gilbert’s mother, Karen Boschetti, explained that just after the Beacon’s story last year, Gilbert came down with double pneumonia and spent most of the summer in the hospital.
In September, Gilbert made the trek to the Cleveland Clinic in Ohio, where she was supposed to receive her new lungs, but was informed she was not healthy enough for the operation.
“She had missed her window for the transplant,” said Boschetti.
The family returned home to Rhode Island, wondering what to do next. That’s when a Facebook friend of Gilbert’s who also had cystic fibrosis told her about the Duke University Hospital’s program.
In October, the family journeyed down to North Carolina, and after undergoing testing; Gilbert was approved to participate in the program.
Boschetti said the typical waiting period for a new set of lungs at the Lung Transplant Program is 12 to 13 days, but Gilbert has been waiting since November. In the meantime, Gilbert is working to get stronger and put on weight. During her bout with pneumonia, Gilbert’s weight dropped to 67 pounds.
Gilbert’s family and some Rhode Island friends are also undergoing testing to be live donors. Living donor lobes (which Boschetti said became a thing of the past as more people signed up to be organ donors) are coming back again. Living donors who match the recipient’s blood type can donate the lower portions of their lungs, which would become the recipient’s new lungs. For now, Gilbert’s transplant is a waiting game – and the game isn’t free.
The Duke University Hospital’s program requires participants to have a certain amount of money in the bank to pay for housing; and on top of that, there are more medical expenses.
That’s where Carol Panarollo Doyle comes into the picture. For the past two years, Boschetti has organized a Bike Run for Lungs for the Kayla Gilbert Foundation, which helps defray the cost of Gilbert’s medical expenses. Since she is in North Carolina this year, Boschetti thought this year’s Bike Run wouldn’t happen. But when Doyle heard that Boschetti and Gilbert needed help, she stepped up to the plate to organize this year’s fundraiser.
Doyle went to high school with Boschetti, but the two haven’t spoken in years. Doyle, a mother of four, said Gilbert’s story touched her, and she felt she had to help.
This year’s Bike Run for Lungs will be held on Sunday, June 10 at The Other Bar, formerly Ozzi’s, at 1795 Post Road. Kickstands go up at 10 a.m. The event is $20 for riders and $10 for passengers. Doyle said there would be food, raffles, entertainment and a few local celebrities at the event. In an interview last week, Doyle said the event was continuing to grow.
Boschetti said she hoped to make the Kayla Gilbert Foundation a fund to help others with cystic fibrosis. For now, however, the money raised will help Gilbert on her path to a new set of lungs and a new lease on life.
For more information, visit the Kayla Gilbert Foundation Facebook page, or call Carol at 486-2275 for tickets.