Becoming Captain of the PAH Team

Haley standing outside with her hands on hips and smiling

Becoming Captain of the PAH Team

How Haley Learned to Advocate for Herself

As her classmates ran a drill for the coach in gym class, Haley gasped for breath. She felt sharp pain in her chest, and her vision began to blur. Beyond her physical discomfort, she was also embarrassed by the attention she received as she tried to walk it off. She didn’t realize it, but she was experiencing the first signs of a rare, chronic condition called pulmonary arterial hypertension (PAH).

At the time, Haley was unable to communicate these symptoms to her parents—let alone a doctor. It would take her years to find her voice and learn the importance of speaking up about her PAH symptoms.

Finding Her Voice

By her senior year in high school, Haley struggled to walk up a flight of stairs. As her symptoms worsened, she finally opened up to her father, who immediately made an appointment for her to see a cardiologist.

On her way to that initial appointment, Haley needed assistance to walk from the parking lot to the building, but she was determined to get help that day. “Initially, they seemed to discount my story, until the nurse took my vitals,” Haley recalls. “When my oxygen levels came back at 85-percent, the doctor came in and said, ‘Something is very wrong with you.’” Despite her doctor’s alarm, Haley was relieved to have her symptoms taken seriously.

After testing to rule out an atrial septal defect, the cardiologist consulted with a pulmonologist, who requested a right heart catheterization. When the results came back, he diagnosed Haley with PAH. She had just turned 18 years old.

Although the doctors explained that she would need to begin treatment immediately, the seriousness of her prognosis didn’t sink in for the strong-willed teen. For years, she struggled to accept her diagnosis.

“I was just not well educated about PAH and in denial,” Haley says. “I didn’t really see a future, so why bother with taking care of myself? I was frustrated with dealing with the pharmacies and insurance. I was just very angry about my diagnosis.”

It was not until years later that Haley accepted her diagnosis and her role as a self-advocate with the help of a PAH specialist.

Seeking Expertise

When Haley was 23, she moved from Texas to New Mexico. She was still resistant to taking her medication until the change in elevation made her symptoms more prominent. Haley knew she needed to get serious about her PAH and asked for a referral to a PH Center.

From her first interaction, Haley was impressed with the proactive approach of the doctors at her new clinic. By the time she arrived for her appointment, they were already familiar with her medical history. Her doctor took the time to go over all the nuances of PAH—including its different categories—which helped Haley better understand and take more ownership of her disease. “My PAH specialist laid a new foundation of knowledge,” Haley says. “It was the first time I was really educated on PAH.”

That day, Haley also heard the term progressive used for the first time to describe PAH. Although it was a sobering “wake-up call,” Haley felt secure and respected at the specialty clinic. It was there that she came to realize the importance of feeling confident in her healthcare team, as it empowered her to become more involved in her own well-being and gave her the courage to move forward with treatment.

Accepting a New Role

At this point in her journey, Haley had an entire team of knowledgeable specialists who were there to provide a holistic approach to her care, as well as assistance with insurance and other resources. “Looking at my records, they knew that they were taking on a very frustrated patient,” says Haley. “But my new doctor emphasized that ‘We are your team, and you’re in charge.’”

As “team captain,” Haley still had one more hurdle to clear to truly become an advocate for herself: acceptance of her diagnosis and treatment. “I was resistant to adding new therapies, and in particular, I didn’t want to be on the pump,” she admits. “I was defiant.”

When Haley’s condition continued to worsen, she knew she needed to speak up and ask for help. “Wearing oxygen 24/7 was the great awakening I needed,” she says. “I was humbled.”

Embracing an Evolving Plan

Haley agreed to add an IV pump to her treatment plan. Although making the adjustment was challenging at first, it became routine with the help of her healthcare team, and she began to feel better. Regaining trust in her own body was the boost she needed to embrace compliance.

Haley also continues to seek out ways to learn about her condition and advocate for herself. In recent years, she learned about risk assessment. She now makes a point to use this tool to monitor her disease for any signs of progression and strive for low-risk status.

Today, Haley is studying to become a respiratory therapist, with plans to work in intensive care or a cardiac catheterization lab. “The universe is putting me where I should be,” she says. “I’ve started working with PAH patients. It’s hard, but I’m excited to do it. I definitely want to educate them about everything that has to do with their condition. I’ve been where they are. That’s my secret weapon.”

Five Ways to Become Your Own Best Advocate

1. Know Your PAH:

“The basis of being a really good advocate is educating yourself as much as you can,” Haley says. “There’s a difference between education and randomly searching for answers online.” Experts insist upon the use of trustworthy sources to gain a greater understanding of symptoms, treatments, and terminology for the purposes of helping you make informed decisions. Becoming familiar with medical terminology related to your condition can help you communicate more effectively with medical professionals.

2. Trust What Your Body Tells You:

“One thing my doctor has taught me is that I do know my own body,” Haley says. “I’ve learned to trust my instincts.” You know your body best. If something doesn’t feel right or a treatment doesn’t seem to be working, voice your concerns. Effective communication builds trust and leads to better care.

3. Prepare for Appointments and Ask Questions:

“I always poo-pooed writing questions,” Haley admits. “Now, I realize it’s so important.” Write down symptoms, challenges, and questions before each visit. For more suggestions on preparing for visits and a list of questions to ask your doctor, read Being Proactive in the Doctor’s Office.

4. Speak Up:

Haley has had to advocate for herself in emergency situations to ensure best practices are followed, and she has become comfortable talking with HCPs about things such as her IV lines and supplies. Like Haley, you may find yourself having to educate doctors who are not PAH specialists about your condition, medications, and interactions.

5. Know Your Medications

It’s important to be knowledgeable about the medications you’re taking and their side effects. “I am well-versed in the generic and name brands for all the medications I’m on and what they do,” Haley says. “I always talk to my HCP team before I have any type of procedure or take any medication.” To learn more about how different types of PAH medication work, go to How PAH Medications Work.

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?

Becoming Captain of the PAH Team