After Lung Transplant, a Return to Running
Apr 27, 2022 Cedars-Sinai Staff
Six months after her double lung transplant, Toni Perez celebrated by climbing 1,398 stairs—about 93 flights—at the Los Angeles Memorial Coliseum as part of the American Lung Association's Fight for Air Climb. The accomplishment marked a full-circle moment for the East L.A. native: In 1986, Toni climbed the same stadium steps when she completed a half marathon at the inaugural L.A. Marathon.
Toni, 65, has always been a determined runner, so when she got too sick to even walk comfortably, she lost a lot of confidence. But in 2021, after two decades of chronic illness, she found life-restoring treatment at Cedars-Sinai. Now she's back to training and running regular 5Ks, and she's hoping to run another half marathon this year.
"If it wasn't for Dr. Rampolla, who helped me get this lung transplant, I don't know where I'd be. I can't believe I'm feeling so strong and free."
"For the first time in many, many years, I feel free," Toni says. "My lungs feel great, and I'm putting them to good use. I'm so grateful to have a second chance in life."
Gasping for air
Toni ran distance events on track teams in high school and at East Los Angeles College. Later, as an adult, she kept in shape jogging up steps at California State University, Los Angeles, near her home. But one summer day in 2007, on a trip to visit her family at their ranch in San Antonio, Texas, a healthy Toni got winded on a leisurely walk.
"This isn't me," she thought. "I just have to keep going."
Over the next year, her health deteriorated. She privately gasped for air so her friends wouldn't notice, and she relied on the elevator to go up one floor at the vocational school where she taught business. Toni couldn't imagine what was making her sick, and she fell into "big, big denial."
A doctor prescribed an inhaler for her debilitating symptoms, but it didn't help. Eventually, in 2009, a friend insisted she visit the emergency room (ER). A biopsy detected hypersensitivity pneumonitis, an allergic reaction that causes inflammation in the lungs. A heavy dose of steroids reversed the damage, and Toni soon resumed hiking and dancing with family and friends.
Resurgence and renewal
In 2013, shortly after her mother's death following a long fight with cancer, Toni's symptoms returned. This time, she was diagnosed with chronic hypersensitivity pneumonitis. Her lungs were permanently scarred, and her health and abilities declined even more than before. Eventually, she needed an oxygen tank and a walker.
By 2019, she relied on disability benefits and in-home support. It was all she could do to force herself, for five or 10 minutes a day, to walk on a treadmill her brother had given her.
By April 2021, Toni began the process of qualifying for a lung transplant with Dr. Reinaldo Rampolla, medical director of the Lung Transplant Program at Cedars-Sinai. That August, on her treadmill, she suffered a collapsed lung.
After a week in a local intensive care unit, she was transferred to Cedars-Sinai, where she awaited transplant. Nurses rubbed her back and patiently supported her while she gained back strength lifting 1-pound weights in her hospital bed.
When lungs became available for transplant, she went into surgery excited. She awoke from the 11-hour procedure in awe of her new opportunity.
"As soon as I could, I wheeled outside, took a deep breath without the oxygen tank, and I couldn't believe it," she says.
Road to recovery
As soon as she was discharged, Toni began two months of three-times-a-week Pulmonary Rehabilitation sessions at the Women's Guild Lung Institute. She attributes much of her recovery to the program, which provides education and low-intensity gym exercise to pre- and post-surgery patients, as well as those with other lung diseases and post-COVID-19 symptoms.
Susan Clark, registered nurse and program coordinator, says the team's primary job is to motivate patients to gain confidence and set and achieve goals. Whether patients hope to travel, play golf or simply get well enough to go to lunch with family, staff provide a monitored, structured place to show them what they're capable of.
"People tend to limit their activities out of self-protection to avoid shortness of breath," Susan says. "Unfortunately, if they're not active, they're vulnerable to complications."
"Research shows that patients who are active have fewer hospital readmissions and ER visits and experience less anxiety and depression. We emphasize that their quality of life depends on the hard work they're willing to put in between their doctor's appointments."
Toni showed up to the first session with her oxygen tank and her walker, but she was willing to put in the work.
"Toni was very weak, but she was very motivated," Susan says. "She wanted a better life. It was a struggle for her, but she really saw this as an opportunity she'd been given. It was very gratifying, and we're very proud."
The long run
After she graduated from rehab, Toni began walking the peaceful paths at Lacy Park in San Marino.
With her newly earned lung capacity and the confidence that Dr. Rampolla and Susan's encouragement inspired in her, Toni leveled up her goals: She registered for the Dia de los Muertos 5K on Olvera Street in downtown Los Angeles, just 11 weeks after surgery. Race day was tough, but she completed it without stopping.
"I wanted to see what my new body could do," Toni says. "When I finished, I felt like kissing the ground."
After that, she participated in a Thanksgiving Day 5K and finished the tough course fueled by gratitude for her Cedars-Sinai lung transplant team. This April, she finished a 7-mile walking and stair-climbing tour in Silver Lake, and she is now training for a 10K run in August to mark her one-year transplant anniversary.
When she recalls the stair climb at the Coliseum and all that she's accomplished with her new lungs, Toni is overwhelmed with gratitude.
"If it wasn't for Dr. Rampolla, who helped me get this lung transplant, I don't know where I'd be," she says. "I can't believe I'm feeling so strong and free."