Heart-Lung Transplant Patient Going Strong, Reaching Dreams at 16-Year Mark

Stanford Medicine Children’s Health celebrates two thoracic organ transplantation milestones: 35 years of pediatric lung transplants and 50 years of heart transplants

Needing a heart-lung transplant has not kept ToneeRose Legaspi from living a full life. She recently completed the final step in preparing for her dream career: becoming a librarian.

“I love reading, and it has been my longtime dream to be a librarian,” ToneeRose says.

After earning her undergraduate degree at the University of California, Berkeley, and working in property management, the 33-year-old went on to finish her master’s degree in library and information science. She hopes to work at a library near her home in San Ramon, California.

ToneeRose also loves to travel. She recently went to Austria, Germany, and Switzerland. Next year, she plans to go to Japan, the Philippines, and Taiwan. She’s excited to see Kyoto and Taipei, two places she’s never visited.

“My goal is to go somewhere new every year—whether it is in my state, the U.S., or somewhere in the world. So far, it’s working,” she says.

When ToneeRose was 3, doctors discovered that she had a septal defect (hole in the heart), which led to pulmonary hypertension (high blood pressure in the lungs). She remembers always being the sick kid, having to undergo cardiology and pulmonary care, including receiving medicine through a continuous pump. She began obtaining care at Stanford Medicine Children’s Health around the age of 8.

“All along, doctors talked about an eventual heart-lung transplant, so it was always on my radar,” ToneeRose says.

That day came when she was 17 years old, a senior in high school in 2008. She remembers the day she learned that a transplant was imminent—she had gone in to Stanford Children’s for a checkup and was sitting doing her homework in a hospital room when she fell asleep. She woke up to providers looking at her with concern. They told her that she was in heart failure, and she had to stay at Stanford Children’s until she could get her transplant.

Six weeks later, a donor heart-lung were located, and her transplant took place. ToneeRose recalls her doctor Jeffrey Feinstein, MD, director of Pulmonary Vascular Disease at the Betty Irene Moore Children’s Heart Center, coming to the operating room the day of the transplant to hold her hand.

She appreciates the support she received from her family before, during, and after transplant. “My older sister, Freeda, went to college nearby and would come to visit, and my mom and dad brought Nina, my younger sister, to visit and alternated sleeping over with me,” she says.

ToneeRose made friends with the nurses on 3-West and remembers one nurse in particular, who would have tea with her. She also met a lot of transplant friends at Stanford Children’s—some who have become friends for life.

She spent that first summer after transplant doing what she loved but couldn’t do as a child because of her medication: swim in pools and the ocean. “After the transplant, I could walk longer distances, and I didn’t tire as quickly. I felt great freedom in not having to bring my pump medication along,” ToneeRose says.

Today, she receives pulmonary care on the adult side at Stanford Health Care. Each quarter, she has a checkup. They watch her lung function, which is stable but slightly decreasing. She understands that she will need another transplant someday, but not anytime soon.

“In October, it will be 16 years since my transplant and 16 years with my original donor heart and lungs,” she says.

“This is a remarkable milestone for Ms. Legaspi and speaks to the incredible advancements that we have achieved in lung and heart-lung transplantation,” says Nicholas Avdimiretz, MD, medical director of the Pediatric Lung and Heart-Lung Transplant Program at Stanford Children’s. “Hearing of these success stories after our patients transition to adult care is what drives our team to continue to innovate, so we can continue to improve both survival and quality of life after transplant.”

The first pediatric heart-lung transplant at Stanford was performed in 1988. With her transplant 16 years ago, ToneeRose is the second-longest-living heart-lung transplant patient at Stanford Children’s, with the longest at 24 years.

ToneeRose shares her experience of getting and living with a heart-lung transplant at area hospitals and also on an international group chat.

The Pediatric Lung and Heart-Lung Transplant Program at Stanford Children’s has performed 98 pediatric lung and heart-lung transplants to date, providing more lung transplants than any other pediatric center on the West Coast and more heart transplants than any other in California. “Our program has a long-standing track record of excellent patient outcomes. Our innovations lie in studying the pediatric lung and heart-lung transplant population internationally and optimizing health, both pre- and post-transplant, with state-of-the-art technologies—to detect early signs of rejection, for example,” says Dr. Avdimiretz. “Ultimately our program is successful due to the strong multidisciplinary team and enduring connections we form with patients and their families.”

Learn more about our Lung and Heart-Lung Transplant Program >