Diana was only six years old when her sister was diagnosed with primary ciliary dyskinesia (PCD), a rare genetic condition that causes chronic lung difficulties. It was the 70s and the protocol for this disease was to remove the damaged lung lobe and be careful to prevent any strain going forward. This meant her sister spent her life being discouraged from physical activity, even as a child.
Diana, on the other hand, spent her early childhood in relatively good health. But in her early 20s, after years of never-ending respiratory illnesses, Diana underwent a lung biopsy and discovered she also had PCD. After watching her sister struggle, Diana was resolute to not to be seen as sick, so she fought hard against her diagnosis. “I have a competitive personality, so I was determined not to let this keep me down,” she explained. Being active and eating healthy was a top priority. She worked out every day, practiced yoga and competed in cycling and running races. She even ran a marathon, though her pulmonologist advised against it, just to prove to herself that she could.
PCD’s Progression
By her 30s, Diana’s sister’s condition had worsened, and she needed to be put on 24/7 supplemental oxygen. She lost her job due to repeated absences and the company’s owner not supporting her need to wear oxygen while working with customers. Although she attempted healthy diets, her ongoing need for steroids and other medications caused her weight to fluctuate dramatically. Her inability to be active contributed to her rapid decline and she became homebound. She was added to a lung transplant list in her mid-40s, but her poor health and issues with her healthcare coverage made her an undesirable candidate. At just 50 years old, Diana’s sister had to move to a nursing home. Her health continued to decline until, a few months later, she passed away.
Facing Disease Another Way
After losing her sister, Diana knew she needed to be proactive about her illness. After a particularly long and severe respiratory flu where she struggled to breathe, she decided to talk with her pulmonologist about a lung transplant. He agreed it was time and referred her to specialists at the Houston Methodist. The healthcare team there decided that Diana’s oxygen levels were dangerously low, especially at night and while exercising, so they recommended supplemental oxygen. “I was horrified to have to go on oxygen because I didn’t want anyone to see me as a sick person. I knew my health was declining but I really tried to put on this show like I was fine,” she said.
Part of Diana’s aversion to oxygen was the memory of how her sister had been during her time on oxygen. She remembered feeling embarrassed for her because of the negative stigma. But she was determined to continue to live her life as normally as possible. It became her routine to wake up at 3:45 a.m. to do nebulizer treatments before she went to the gym where she would wear her portable oxygen tank. “Having to go to the gym the first day wearing the oxygen was really uncomfortable but my friends supported me, and that really helped,” Diana remembered.
Then she would work all day, come home and do another nebulizer treatment and repeat. This worked for a while, and Diana began to believe maybe she could put off the transplant. Instead, she decided to work with her healthcare provider on an alternative antibiotic therapy program in hopes of improving her lung function. Unfortunately, her pulmonary function test scores went down during that time, leaving her resolved to go through the transplant process.
From Transplant to Recovery
On April 28th, 2023, Diana received a double lung transplant. Three days into recovery, she was diagnosed with COVID-19, which further complicated the healing process. “I was up and walking around and then one night I just couldn’t breathe, I thought I was dying. But the medical team got me through it,” she said. Just 19 days later she was discharged and sent home.
Unfortunately, Diana struggled to eat, and she began to lose weight at an alarming rate. She was readmitted to the hospital for an iron infusion and was put on medication to increase her appetite. From there she began to steadily improve. By September, she was back on the treadmill and in the weight room at the gym.
Before her transplant, Diana had a fast-paced job as an SVP of Human Resources. During her recovery she decided that, though she loved to work, the stress of her current job was detrimental to her health. So, she quit. “I am a very independent person so leaning on other people and not being able to work or exercise during the recovery process was hard for me. Being isolated and not being able to do the things you love is tough mentally, I have a lot of empathy for people in that situation,” she said.
Life Changes that Come with Determination
One of the best things about her lung transplant was that Diana no longer needed her oxygen tank. She was excited because the large and noisy oxygen concentrator she needed to sleep in every night was a constant challenge for her husband, though he never complained. “I know other oxygen users who can’t sleep in the same room as their spouse anymore because of the noise, but my husband didn’t complain,” Diana said. “It was his support and understanding that has made this process that got me through it all.”
She was able to get back to her workout routine without the need of her portable oxygen concentrator. After her lung transplant, she also found traveling to and from work or on an airplane to be much easier. Previously, traveling for work had become very stressful because, though she brought her portable concentrator with her, she was too embarrassed to wear it in the airport or around other people. “It’s funny because if I saw someone on crutches, I wouldn’t think anything of it. But I feel like being on oxygen has a negative stigma, like people on oxygen are sick, contagious and unable to help themselves and I didn’t want to be seen that way,” she explained.
SOAR Act
It’s Either Your Excuse or Your Reason
Though Diana would never wish her circumstances on anyone, she has used it to inspire her to continue to take care of her health. Diana now lives by the motto: “it’s either your excuse or your reason,” which refers to the way you can approach a diagnosis and tackle a health problem. She explained that she believes that the attitude someone takes toward their diagnosis and treatment is essential to living a good life. “Either you can blame it and let it define you or you can help it empower you to understand what you can control and live better,” she said. “I feel like I never gave in to being sick, I just kept living my life and didn’t let being sick define who I was.” And she never will.
If you are living with a chronic lung condition, it is important to learn as much as you can about your disease and take an active role in managing your disease.
Blog last updated: April 17, 2025
