Nicole's Story: Living Fully with Pulmonary Arterial Hypertension Oxygen Therapy

Navigating Life With Oxygen

In the early days after her diagnosis, physical activity for Nicole was difficult. Like many people living with PAH, she had the misconception that oxygen use automatically meant a sedentary life.

A turning point came when Nicole began pulmonary rehabilitation. She spent several years going to rehab periodically, learning how to move her body safely, practice breathing techniques, and rebuild her confidence. Through rehab, Nicole began to see oxygen not as a restriction, but as a support. It helped her tolerate activity and exercise more.

“It’s a gradual process,” Nicole explained. “You build up. Patience and consistency are key.” Today, her routine is built around patience, consistency, and planning. She walks about a mile each day, uses hand weights, and listens closely to her body.

Making Plans

Living with supplemental oxygen requires preparation, something Nicole and her mother, Jane, have learned well. Whether it’s choosing between a tank and a portable oxygen concentrator, packing extra supplies, or mapping out charging stations, planning is key.

“There’s no spontaneity with oxygen,” Jane said. “You have to plan everything—how long you’ll be out, how much oxygen you’ll need, and what the day will look like.”

Nicole agrees, but she doesn’t see planning as a downside. Instead, it’s part of how she maintains independence. “If you can’t do an all-day outing, that’s okay,” she said. “Maybe you just do lunch. It’s about adjusting expectations.”

Socially, Nicole has found friends who are understanding, though adjustments are sometimes required. “Friends may be used to all-day activities, and I have to explain my limits,” she said. “Some people are accepting. Others say they are, but they don’t fully grasp the day-to-day realities of living with oxygen.”

Letting Go of Stigma

One of the hardest parts of using oxygen, especially at a young age, has been navigating stigma. Nicole knows many patients who avoid wearing oxygen in public, even when they need it. “There’s this perception that if you need oxygen, you must be really sick,” she said. “That stigma exists for younger and older patients alike.”

For a long time, Nicole felt shame around her oxygen use. “It’s the most visible sign of my PAH,” she said. “It lets everyone around me know that I am disabled.” Acceptance didn’t come overnight, but it came with experience and results.

“I’ve accepted that I need it and that it helps me,” she said.

Visibility, Nicole believes, matters. The more people see others confidently using oxygen, the less isolating it becomes. “I wish more people who need oxygen would wear it,” she said. “It might make everyone feel a little less different.”

Jane has watched that confidence grow over the years. “When I look at Nicole’s whole life from before her diagnosis to now, I see her as my hero,” she said. “She’s handled things no one should have to endure. Yet she takes her medication and wears her oxygen like she should with no complaints.”

Moving Forward, One Breath at a Time

On difficult days, frustration still surfaces. But even on those hard days, she keeps moving forward, guided by the belief that caring for her body is an act of living fully.

“I’ve always had the attitude that if I want to survive, I have to do this,” she said. “Even when it’s hard.”

For Nicole, oxygen isn’t about limitation. It’s about possibility. It’s what allows her to walk further, exercise safely, travel with planning, and maintain independence.

“It took me a long time to accept that I have to wear it,” Nicole said. “But it’s helped me do more than I ever thought it could, and for that, I’m very grateful.”