PAH Initiative Ambassadors are patients living with PAH or are caregivers, and they were compensated for their time.

Accepting Supplemental Oxygen
for PAH: Haley's Story

How Supplemental Oxygen Helped Haley Make Progress

Supplemental oxygen can mean many things for people in the pulmonary arterial hypertension (PAH) community. For newer patients, it often means visibility, limitation, and the loss of independence; it serves as a representation of the physical and mental challenges PAH imposes. But, as many come to find in their treatment journeys, oxygen is not a hindrance—it’s a powerful tool for progress.

This was certainly true for Haley. Learning to accept and use supplemental oxygen was one of the biggest battles in her ongoing fight with PAH. For years, she refused to wear it, fearing the attention it might bring her and viewing it as a sign of illness. But by working with her healthcare team and using supplemental oxygen, Haley’s perception of oxygen use has transformed from one of weakness and shame to one of accessibility, empowerment, and progress.

First Breaths and Initial Resistance

Initial resistance to oxygen is common for many members of the PAH community. Some may feel like their oxygen concentrators are large signs telling the world they are sick; others may worry about becoming reliant on oxygen tanks and having to monitor their supply on a day-to-day basis.

Haley felt all of this when she was first diagnosed with PAH in 2010. Being a strong-willed young adult, the image of using a concentrator was far removed from her perception of herself at the time.

“My first pulmonologist suggested I start wearing oxygen 24/7 in our first ever meeting—but I strongly resisted this,” Haley said. “I didn’t want to be seen as reliant on anything. So, I didn’t use my oxygen, or really any of my other treatment options, for several years.”

Haley didn’t seriously consider using oxygen as part of her treatment plan until PAH began to impact her daily life. In 2015, Haley moved from the flatlands of Texas to the mountains of New Mexico. Although she enjoyed exploring her new home, the higher altitude and physical exertion she experienced while hiking exacerbated her symptoms. As her symptoms progressed, walking longer distances became a struggle, and sleeping no longer brought her rest. As her condition worsened, she was referred to a PH center, where a team of specialists helped her see how oxygen could help her enjoy life.

“My pulmonologist was shocked when she found out I had been refusing to use oxygen,” Haley said. “After that, she sent concentrators and tanks to my home without telling me. I’m so glad she did because I was so stubborn then. My PAH was getting worse, and I really needed to start using oxygen out of necessity.”

Reframing Oxygen as Progress

By the end of 2016, Haley was using oxygen 24/7. For many PAH patients, increasing oxygen use may signal regression, but looking back on this time now, for Haley, it was the first sign that she was making progress towards acceptance.

“Progress for me needed to happen mentally before it could happen physically, and accepting oxygen was my first big jump forward,” said Haley. “I didn’t want to deal with my PAH before then; dealing with it meant acknowledging I had a problem. But I needed to become an active participant in my own healthcare journey if I wanted to fight against my symptoms.”

Once she became an active participant in her own healthcare journey, the physical progress followed. With oxygen, she found she was able to move more, sleep better, and after obtaining a portable concentrator, was even able to start getting back to hiking again.

“Oxygen did not bring limitations into my life like I thought it might—it brought accessibility,” said Haley. “It allowed me to recharge at night. It allowed me to explore more. I feel like it can be seen as a hindrance on the surface, but it’s actually enabled me to do more. And that’s what progress really is.”

“Progress for me needed to happen mentally before it could happen physically, and accepting oxygen was my first big jump forward,”

–Haley, PAH Initiative Patient Ambassador

Treatment Through Collaboration

Haley discovered that as PAH progresses and changes, so too does the need for oxygen. When navigating these changes, it takes close collaboration between patients and their healthcare providers to find the right steps forward. For Haley, this collaboration was built on a foundation of trust.

“We have a mutual understanding where I can trust them for their expert knowledge, and they can trust me to know what’s best for my body,” said Haley. “If we change the amount of oxygen I use, they rely on me to know how I’m responding to these alterations just as much as I rely on them to know what potential treatments are best for me.”

Meeting Your Needs

By learning to accept oxygen as a vital part of her treatment plan, becoming an active participant in her healthcare journey, and collaborating with her healthcare team, Haley has been able to take the reins of her PAH. Since beginning treatment, she added an IV pump to her treatment plan and other therapies that have helped to reduce her oxygen usage. Haley has gone from using oxygen 24/7 to only using it overnight. However, she still thinks of oxygen use as a sign of progress.

“Everyone’s baseline is different when it comes to oxygen and PAH,” said Haley. “When I started using oxygen and thought I was getting worse, that could’ve been someone else’s baseline, and they’re feeling great because oxygen is getting their needs met. I would never see someone using oxygen and think they’re sicker than me; they’re just meeting their body’s demands!”

And that’s really where progress lies. It’s not about limiting oxygen usage or appearing healthier—it’s about empowering yourself by meeting your needs, whatever they may be.

Learn more about PAH

PAH is a complicated disease that can be difficult to understand. We’ve broken it down for you with easy-to-understand information, simple graphics, and informative videos from a PAH specialist.

What Is PAH?

Accepting Supplemental Oxygen for PAH: Haley's Story