All images courtesy of @fight2breathe
Before Caleigh was even born, serious medical complications were detected on her mother’s ultrasound. “When I was born, they couldn’t tell right away what was wrong, but they realized I was in a lot of pain,” Caleigh says. The healthcare team rushed her to emergency surgery where they discovered she had meconium ileus, a bowel blockage often linked to cystic fibrosis (CF). In 1990, less was known about cystic fibrosis. In fact, the gene for CF had only been discovered a year earlier, and so doctors were still learning about the rare genetic condition that causes severe damage to the lungs, digestive system and other organs in the body. “It was just a stroke of luck that my surgeon had seen another child with cystic fibrosis recently, so he recognized the signs,” Caleigh said. It is this disease that would become one of the biggest challenges of Caleigh’s life.
Growing up with CF
After surgery, doctors confirmed the diagnosis with a sweat test, and at just three months old, she began seeing a CF specialist. Her first year of life was a tough one. Caleigh was consistently extremely underweight and lethargic so her parents hit the books, looking to devour any information they could about cystic fibrosis. Eventually they found the Cystic Fibrosis Foundation who put them in contact with their nearest accredited CF care center. “After that, I got treated by a doctor who helped me achieve a normal baseline. He saved my life, and I was healthy all the way through childhood,” Caleigh recalls.
During this time, Caleigh lived just like any other active kid. She was an athlete, running track, doing gymnastics and cheerleading. “I was really open about my disease,” she said. “Everybody knew, but it didn’t come up much because I looked healthy.”
Unfortunately, things changed as she entered high school. Her lung function began to decline, and she started needing to visit her doctor for what the CF community calls “tune-ups.” These visits included a two-week hospital stay in which her doctor could administer IV antibiotics and other drugs as needed to help her restore her baseline lung function. “The hope is that it will slow down your lung decline, but those hospital visits became more and more frequent,” Caleigh explains.
When Health Takes a Turn for the Worse
By her senior year, Caleigh found herself in and out of the hospital almost every other month, making it hard to keep up with schoolwork and her grades began to drop. She decided she wanted to go to culinary school instead. “During that time, I was sort of in denial about how poor my health was,” Caleigh explained. “I was living half my life in the hospital and half my life at home. And I was putting on a mask and pretending to be healthier than I was when I was around other people.”
Despite her declining health, she was able to graduate and quickly began working as a pastry chef at a Michelin star restaurant. “I loved it,” she said. “The fast-paced, stressful environment was something I thrived on.” But her health continued to deteriorate and eventually her body couldn’t keep up, and a bout of pneumonia left her bedridden and unable to breathe. She was rushed to the emergency room where her healthcare provider determined her lung function had dropped to 20%. “At that point, I was put on oxygen and told I needed a feeding tube,” she said. “That was really hard—going from an invisible illness to a very visible one.”
Fighting for a Second Chance
The pneumonia led to months in the hospital and several infections. Doctors determined Caleigh desperately needed a double lung transplant—but they said she didn’t qualify. “They told me I was labeled as non-compliant,” she said. “I didn’t really understand that. I thought I was doing everything right.” But looking back, Caleigh sees things differently. “I think I could have been more aggressive about my care and gotten help at the first sign of illness. But at that point I had been trying to live as normally as possible,” she explained.
Despite the roadblocks, her mother refused to take no for an answer. She worked closely with Caleigh’s doctor to make a plan to help Caleigh qualify. Caleigh needed to gain weight, lower her A1C (she also has diabetes), and check in daily with her care team. “It took me two years,” she said. “And during those two years, I was really sick, but my mother was my hero and she and my brother helped me through it.” Eventually, Caleigh was approved for the transplant list and, 18 months later, she received a new pair of lungs.
“I felt really great right after the transplant, and just seven months later, with approval from my doctors, my mom, brother and I traveled to Hawaii.” Caleigh said. Though most of the trip was magical, it ended abruptly when Caleigh experienced CF complications that required her to be put on a ventilator and soon after put her into a coma. She was life-flighted back to California and placed on ECMO. When she awoke a month later, Caleigh had a long road to recovery ahead of her. “I had to relearn to swallow, talk, walk—everything,” she said. She worked diligently with her healthcare team and was able to return home three months later and continue the long road to recovery.
Showing Resilience Despite Complications
During that time, Caleigh met her future husband. “We fell in love very quickly,” she recalled. “I was very open about my illness and what my future could be.” And a few months later, just a year after her first transplant, she went into organ rejection.
Her healthcare team recommended another lung transplant, but by then her condition had become critical and they worried she did not have the strength to survive surgery. “My lung function was 9%,” she said. “I needed high-flow oxygen all the time. My husband and brother took turns living with me in the hospital for six months.”
Caleigh found a transplant center willing to do the surgery and she received her second double lung transplant. “I remember taking that first breath, and it was like nothing I had ever felt before,” she remembered. “I just kept saying, ‘I am so happy,” because this transplant felt different.”
Yet again, Caleigh experienced complications during recovery, including recurring fluid around her heart (idiopathic pericardial effusion) that required multiple surgeries. Eventually, her condition stabilized and in 2019, four years after her first transplant, she was able to start living for more than her illness. Caleigh and her husband decided to make up for lost time and in 2021, they packed their belongings and dogs into a van and began to travel through North America. The adventure lasted for over three years and only ended when they were given an opportunity to move abroad, to live in Spain.
The Power of Knowledge and Community
Throughout her struggles, Caleigh found strength in learning more and leaning on those she loved.
“The biggest thing I’ve learned is to keep educating myself. Medicine and science are always changing, so we have to keep up,” she said. She encourages patients to ask questions and advocate for themselves. “If someone tells you you’re not eligible for something, ask why, then you can work to change it. That’s how I got my transplant.”
Most importantly, she knows that her family and friends are the reason she is able to keep going despite her many setbacks. “If I could tell my younger self anything, it would be to value the people who love you unconditionally and not worry so much about those who don’t understand,” Caleigh reflected.
“When I was really sick, I felt really insecure,” she said. “But having friends and family still invite me to parties and hang out with me meant everything. It made me feel like I still belonged.” Caleigh’s journey reminds us that with the right support, determination, and advocacy, life with cystic fibrosis can be not just about surviving—but truly living.
Blog last updated: November 19, 2025
