A Chili mother is grateful after life-saving, dual-organ transplant surgeries following a massive effort at UR Medicine's Strong Memorial Hospital.
More than 250 clinical and support staff – enough to fill three city buses – helped with her care, which included more than 14 hours of surgeries to give her a new heart and a new kidney.
“It was a huge amount of people all working together on a really long day,” said cardiac transplant surgeon Katherine Wood, MD. “It was one day in her journey. And she’s going to have many good days because she received a great heart and a great kidney.”
Nursing student Ashley Cuylear, 32, is grateful to her donor. “They gave me my life back,” said the mother raising 16-year-old Aliyah.
“I feel so much better and it’s great to be home,” she said after eight weeks in the hospital. “I want to tell my donor’s family that I appreciate what they’ve done. I need to find the right words, from my heart, to thank them.”
Clinical and support staff from nearly 20 departments throughout the University of Rochester Medical Center – from Anesthesiology, Pathology and Pharmacy, to Nutrition and Social Work – contributed to Cuylear’s successful outcome.
Strong Memorial Hospital is the only center in Upstate New York to provide heart and liver transplantation, in addition to kidney and pancreas transplants. The center has performed 135 dual-organ cases, primarily with kidney-pancreas or kidney-liver combinations. Heart-kidney transplantation is much less common.
There are more than 500 people waiting for a new kidney, heart, liver, and pancreas at Strong Memorial Hospital, including nine who need multiple organs.
“Each transplant is a gift not only for our patient and their family but for our dedicated team members whose mission it is to provide second chances and more quality time,” said Roberto Hernandez-Alejandro, MD, chief of Solid Organ Transplant Surgery. “When a patient is in need of two life-saving organs in order to survive, it further underscores the life-changing power of donation.”
A long journey
The Oct. 28, 2022, transplant surgeries ended a decade of illness, with doctors’ visits, medication, and other treatments to combat the deterioration of her kidney and heart.
When she was just 22 years old, Cuylear was hospitalized for severe belly pain, and testing led to a diagnosis of lupus nephritis. Lupus is a hereditary autoimmune disorder that causes the body to attack its own organs, often beginning with the kidneys and later the heart. That’s what was happening to her.
“It was pretty dramatic because the disease was severely affecting the kidneys,” said Jennifer Anolik, MD, PhD, a rheumatologist who also leads a busy team of scientists studying the disease.
Aggressive treatment with high-dose immunosuppressant helped get the lupus under control. Unfortunately, damage to her kidney was extensive and irreversible, and she needed dialysis therapy, said Catherine Moore, MD, nephrologist.
It was a few years later that Cuylear joined the waiting list for a new kidney.
Cuylear did a remarkable job managing dialysis therapy and medical appointments, coordinating her daughter’s fast-paced schedule as a three-season student-athlete. That was on top of her own education to become a registered nurse.
“I was always in the car. I had to get my daughter to school, practice, and her games, and get to and from my own classes. It was every day. But I was keeping up with it,” she said.
She was a “soldier,” Moore said. “She would power-through and make it look like everything was OK, when, in reality, her body was not OK.”
Last fall, everything came to a grinding halt.
She couldn’t climb a flight of stairs without stopping to catch her breath. Cuylear was tired and assumed it was dialysis therapy, which is exhausting. Yet she kept pushing ahead.
Her mother noticed the weakness and fatigue and insisted Cuylear get care immediately. At Strong’s Emergency Department, doctors honed in on her heart. The news wasn’t good, and the first in a series of scary moments.
The Advanced Heart Failure team recognized the possibility that she’d need a new heart in addition to a new kidney. Cuylear was surprised and asked a lot of questions. The answers became obvious when her heart function declined and doctors turned to life-saving mechanical support called ECMO (extracorporeal membrane oxygenation.) This system maintains heart and lung function and provides oxygen-rich blood to the body.
‘It Takes a (Large) Village’
Transplanting two organs is a complex undertaking and amplifies the need for precision planning. Both transplant surgery teams and support staff from throughout the hospital worked in perfect harmony.
They went to work immediately, as the Gifts of Life could come at any time. They reviewed every step of the surgeries, timing, testing, and medications to prevent organ rejection. For more than eight hours, the multidisciplinary group developed plans to address any potential scenario and challenge, said transplant cardiologist Jeffrey Alexis, MD.
“A dual-organ transplant requires tremendous coordination and communication between the two transplant teams – heart and kidney in this case. We started working on this as soon as Ashley was added to the waiting list for the heart transplant,” said Karen Pineda-Solis, MD, kidney transplant surgeon. “It stretches our teams all across the center.”
Finger Lakes Donor Recovery Network, the organ procurement organization affiliated with the University of Rochester Medical Center, in partnership with other Upstate New York hospitals, was instrumental in coordinating the organ donation. When the heart arrived at Strong Memorial, everyone was ready.
“Ashley received a beautiful heart and it started to beat immediately,” Wood said. She praised anesthesiologists Francis Chang, MD, and Yang Gu, MD, for their support. “We had a great anesthesia team that followed her respiration and medications to protect organ function. They are very detail-oriented and that allows surgeons to focus on the transplant.”
Doctors closely monitored the new heart’s function to ensure it was strong and Cuylear was stable. Just four hours later, the second team moved forward to give her a new kidney. The timing signaled the heart was powerful because sometimes the transplant is delayed a day if the new heart needs time to “wake up,” Wood said.
Surgeons Pineda-Solis and Mark Orloff, MD, and Gu, performed the three-hour kidney transplant.
The two teams were in constant communication throughout the day, prepared to adjust their plans if needed. It wasn’t necessary, because both surgeries went smoothly. “We have highly specialized teams throughout the Medical Center that can support these very complex procedures,” Pineda-Solis said. “That allows us to provide two transplants – two big operations – in a single day.”
Organ donation is a critical component of Cuylear’s life-saving surgeries.
In the U.S., there are more than 104,000 people waiting for organ transplants, including about 8,100 in New York. Those figures far exceed the number of organs donated each year, according to the Finger Lakes Donor Recovery Network.
About 45 percent of eligible New Yorkers are registered organ donors. In the Finger Lakes region, 63 percent of eligible adults are enrolled in the registry, which is very close to the national rate of 64 percent. A donor can save as many as eight lives.
The shortage of organs means very sick patients must wait longer for life-saving surgeries. Sadly, 17 of them die each day before an organ becomes available. Anyone age 16 and older can enroll in the New York State Donate Life Registry:
- online at https://www.passlifeon.org/;
- at the Department of Motor Vehicles;
- applying for health care benefits through the New York Health Exchange;
- registering to vote; or
- using UR Medicine’s MyChart patient portal.