How Family Members Can Help with PAH Care

Adjusting to Life With PAH

For Nicole, coming home marked the beginning of a new, unfamiliar routine. Adjusting to oxygen therapy was exceptionally difficult for her, physically and emotionally. “I was the only person I knew who wore oxygen,” she said. “It was hard to get used to, but I had to wear it.” Nicole was never alone as she adjusted to this new reality—one filled with appointments, treatments, and emotional hurdles. Since the day she was diagnosed, she and Jane have faced PAH side by side. Jane stepped into the caregiver role with fierce devotion, organizing appointments, medications, and oxygen deliveries for her daughter. “I’ll do anything that I can for Nicole to make her life a little bit easier,” Jane said.

An Evolving Team

For years, Jane was Nicole’s voice during medical appointments, advocating by asking hard questions and pushing for answers while Nicole tried to make sense of it all. “My mom is more articulate than I am,” Nicole said. “I find it hard to speak up for myself in the moment.” But over time, Nicole began finding her voice by asking questions at doctor’s visits and sharing how she felt about her care.

These days, Jane mostly observes from the sidelines at Nicole’s appointments, jotting down notes and only jumping in when Nicole needs backup—often signaled with a simple glance. When duty calls, Jane steps in without hesitation. “I try not to cross boundaries, because she is a grown adult,” Jane said. “But I also know that she struggles with voicing her advocacy.” Together, they’ve built a rhythm that works—one rooted in mutual trust and understanding.

Embracing a New Future

After her diagnosis, Nicole faced several challenges, but one of the most difficult was reimagining what her future could look like. Staying employed in a traditional job while on 24/7 oxygen felt out of reach for her. “I really wanted to be a veterinarian, and I didn’t think I could do that anymore,” Nicole said. “It felt like my future had been ripped away.”

During this time, Nicole’s love for art transformed from a casual interest into something much more meaningful. “Drawing became an escape,” she says. “It felt like the only thing I could really do.”

Today, Nicole creates digital art full of personality and passion, often inspired by animals and her own original characters. Her work, which is proudly displayed throughout her family’s home, reflects the creativity and resilience that have carried her through the most difficult times.