When the Beacon last checked in on Kayla Gilbert in June 2012, she was awaiting a second lung transplant that would save her life. Today, the Warwick native is in North Carolina recovering from a unique transplant surgery.
After waiting almost a year and a half at the Duke University Medical Center (DUMC) in North Carolina, Gilbert received word that matches had been found for a living donor lung transplant. Gilbert had asked through the Kayla Gilbert Foundation’s Facebook page for followers to get tested; Kayla’s adoptive second cousin Margaret and Margaret’s boyfriend Tony were matches.
Gilbert’s mother, Karen Boschetti, is so grateful that these family members had the courage to undergo the surgery and each donate a lower lobe of one of their lungs to Gilbert.
Boschetti recalls leaving the Cleveland Clinic in Ohio in summer 2011 with the recommendation to bring her daughter home and put her in hospice care. Gilbert’s body had begun to reject the lungs she received during her first transplant in February 2008 and was very sick due to double pneumonia.
“I didn’t see putting her in hospice at 24; I just couldn’t do that,” said Boschetti of her daughter, who was diagnosed with cystic fibrosis at just 2 months old.
The family had heard about the work done at DUMC and traveled to North Carolina on Sept. 30, 2011 to begin treatment. Gilbert has not been back to Rhode Island since.
Boschetti explained that DUMC is often seen as the place transplant patients need for a “last chance.”
After waiting for more than a year for word on a traditional transplant, Gilbert became restless and asked her doctors to look into performing a living donor transplant.
Boschetti explained that DUMC had performed this type of transplant before but hadn’t done so in almost nine years because of an increase in organ donors.
Boschetti estimates 50 patients were tested before they found matches in Gilbert’s second cousin and her boyfriend.
“It’s just funny that family didn’t match as much as an adoptive cousin and her boyfriend,” said Boschetti.
Gilbert and her donors underwent surgery on Jan. 23. Both donors recovered quickly; Boschetti said the two will be able to live as normal and should not feel a difference in breathing. Gilbert faced more complications.
Boschetti explained that her daughter spent almost two months in the ICU due to setbacks following surgery. Gilbert even went into cardiac arrest and was gone for three minutes before doctors could revive her.
Today, Boschetti said her daughter is doing well and is anxious to visit her hometown.
“She is asking doctors at every visit when she can do a four-day visit home. They do think she will be able to do that eventually,” she said.
For now, Gilbert’s life consists of doctor’s appointments and pulmonary rehab. Gilbert has participated in the rehab program since she arrived in North Carolina to improve her strength before surgery and after. Boschetti explained that rehab consists of walking, performing weight exercises, working on a stationary bicycle and taking a floor class to work on breathing technique.
“Everything is monitored,” she said. “The people who work there are great.”
Following her transplant, Gilbert was required to complete 23 more days of rehab, but setbacks and a string of doctor’s appointments has made scheduling difficult.
“It is hard because she is constantly meeting with doctors,” said Boschetti, who estimates her daughter has three appointments a week.
Although Gilbert has not been home in almost two years, family, friends and supporters can find regular updates on the Kayla Gilbert Foundation’s Facebook page.
“We can see what countries are checking in on her,” said Boschetti about the visitors to the page. “It is not just Warwick checking on her.”
In addition to updates, the Kayla Gilbert Foundation works to collect funds to help cover Gilbert’s treatment. The foundation has sponsored a motorcycle run for the past three years and the fourth annual run is set to occur on Aug. 4 at Dan’s Place (880 Victory Highway, West Greenwich) at 10:30 a.m. Tickets for the ride are $25 and include a steak fry.
In addition to their foundation, Gilbert’s family has enlisted the help of the National Foundation for Transplants (NFT). Emily Joyner, the director of communications for NFT, explained that the organization is a non-profit based in Memphis, Tenn., which helps transplant patients raise funds to support their treatment.
Boschetti said the funds raised would help to cover relocation costs, medication and reimburse the donors for wages lost due to the surgery.
Joyner said the Gilbert family’s fundraising goal is $50,000.
As Gilbert’s condition improves, she is beginning to look to her future. The Pilgrim High School graduate was studying animal science at the University of Rhode Island before her first transplant. Boschetti says Gilbert has considered returning to the program but knows that it may not be possible because of her condition. “She has always loved animals, but she wants to put her health first. She is really listening to her doctors,” said Boschetti.
Gilbert is considering a career in the medical field as an alternative.
“Kayla’s main thing right now is cystic fibrosis awareness and organ donation. I am hoping once she gets better, she will speak about this,” said Boschetti.
For now, Gilbert and her family will remain focused on her recovery.
“She is so grateful every day. She would not be here without Margaret and Tony,” said Boschetti. “I sometimes find it so overwhelming what they did.”
To learn more about Gilbert, visit the Kayla Gilbert Foundation Facebook page. To donate to her cause through NFT, go to www.transplants.org, click on the yellow “Find NFT patient” button and search for Kayla Gilbert. For more information about the motorcycle run, call 871-1444.