A life-or-death decision faces a young woman and her family: Continue living with her diseased lungs or get listed for an organ transplant?
A change in the way organs are allocated may have helped save her life.
Every 10 minutes in the United States, someone is added to the national transplant waiting list. And every day, 20 people die waiting for a suitable organ.
But a change late last year by the national association that oversees organ allocation is having a profound impact on some patients.
Jenna Simonetti, of Rochester, New York, lived most of her 29 years with a life-threatening condition. Doctors diagnosed her with cystic fibrosis at age 6.
“I played soccer, ran around like a normal kid,” Jenna said.
But as Jenna got older, infections caused by the CF started to destroy her lungs. By her mid-20s, she needed oxygen 24 hours a day.
One night, her oxygen slid off while she slept and she awoke up disoriented.
“They told me I had two options," she said. "I could stay here and die here or go and get on the transplant list.”
“They flew her out here and that was terrifying, because she was in the helicopter and my wife and I were driving on the thruway to get here," said Anthony Simonetti, Jenna's father. "We weren’t sure what we were going to find when we got here.”
Doctors scanned Jenna’s lungs and she went on the transplant list in Pittsburgh. Just two weeks later, on Thanksgiving 2017, a change by the United Network for Organ Sharing, or UNOS, provided surgeons a life-saving opportunity.
“Basically, overnight, there was a change to say the sickest patients within a designated area, 250 miles of a donor hospital, should be in the same pool to receive organs,” Dr. Jonathan D’Cunha said.
Later that night, Jenna and her family learned lungs were available at a hospital within that 250-mile radius.
Ten months after her double lung transplant, Jenna is breathing freely and showing no signs of rejection.
“It saved my life,” she said.
Before the organ allocation change last Thanksgiving, the United States was divided into 58 local donor service areas. People on the transplant list were first matched with donors within their service areas, even if another potential match was closer geographically.
For now, the new rules just apply to heart and lung transplantation.
TOPIC: NEW LUNGS FOR JENNA
REPORT: MB #4476
BACKGROUND: Many people with cystic fibrosis face the possibility of a lung transplant. Lung transplantation can extend and improve the quality of life, but it involves an extensive evaluation process and a commitment to living the lifestyle required to keep your new lungs healthy. Donors may have previously agreed, in the case of their death, to give their healthy lungs to people who need them. However, it is vital that a person who wishes to donate their organs at the time of death have a discussion with their families of their expressed wish. If a person dies unexpectedly and has not previously indicated whether his or her organs may be donated to those in need, the family may give doctors permission to donate their loved one's lungs.
UNOS: Real-time, detailed communication is essential to coordinate the process of organ donation and transplantation. For many years, most information was shared by phone and fax. As information technology has rapidly evolved since the early 1990s, UNOS has continued to develop proprietary, secure, online-based systems to place organs efficiently and collect essential data to improve the transplant field. A key application within the system, DonorNet, electronically records key information about donor offers and sends it to transplant hospitals with compatible transplant candidates. This system allows the rapid and efficient consideration of organ offers, which can lead to more life-saving organs being accepted and transplanted.
NEW GUIDELINES: Jonathan D’Cunha, MD, PhD, FACS, Chief of Lung Transplantation at UPMC said, “Prior to Thanksgiving of last year we had donor service areas where the lungs were allocated first to the area based on severity of illness. And then they went out to the national pool after that, after the local centers passed on the lungs. So what happened was there was actually a lawsuit last fall around the time of Thanksgiving where one of these lines that was drawn, there was a sick patient across the border.” This change is making a difference for many patients: “prior to Thanksgiving patients on our wait list would wait somewhere between 175 and 200 days on the wait list. And now you’re transplanting people within 25 to 35 days currently.”
(Source: Jonathan D’Cunha, MD, PhD, FACS)