Jen was a busy nurse, wife, mother and friend when she first started experiencing the symptoms that would eventually lead to a diagnosis of pulmonary arterial hypertension (PAH). Once able to juggle long workdays and weekly jogs, Jen suddenly found herself winded after climbing a single flight of stairs.
Pulmonary arterial hypertension is a rare, progressive disease that occurs when the very small arteries throughout the lungs narrow, which increases the resistance to blood flow through the lungs. Often times the cause is unknown.
Around Christmas 2004, Jen started experiencing dizziness, shortness of breath and a racing heart. Multiple trips to her primary care provider and the emergency department, and an initial visit to a lung specialist, resulted in a misdiagnosis of asthma and instructions to increase her exercise.
With no improvement and alarmingly worsening symptoms, Jen consulted another lung specialist who performed a pulmonary function test that suggested something more serious was happening. Further testing finally uncovered the cause of her frightening symptoms and gave Jen the answers she had been searching for.
Finding Her Footing
Jen remembers feeling the ground shift beneath her when she was initially told that she had PAH. Even more devastating was being told she should start accepting that she may not have a normal life expectancy. She found herself preparing for moments she feared she might miss, saving money for her young daughter’s future wedding and questioning if she would live to see it.
But Jen’s fear didn’t stop her from advocating for her care. She moved forward, working closely with her pulmonary hypertension specialist to get the right treatment plan for her needs. Jen credits “keeping the lines of communication open with my specialist and working together as part of the care team” on getting her on the right treatment path specifically for her body. Without realizing it, she was laying the groundwork to ensure she had a strong network to work with her and support her throughout her PAH journey.
More than 20 years later, Jen continues to work closely with her specialist and is grateful for the integral role that each member of her care team plays in improving her quality of life.
A New Path Forward
Unfortunately for Jen, the physical demands of her nursing career required her to leave her job. “Stepping away from nursing was heartbreaking. It wasn’t just a job; it was part of my identity. Caring for patients and their families during vulnerable moments gave my work deep meaning, and when my body could no longer keep up, I felt like I had lost a piece of myself,” she said.
She calls this time a season of grief; however, she started to look for new ways to find meaning and move forward. Jen began reaching out to other people living with PAH and educating herself about her disease. Her passion for writing and advocacy led her to a rare disease news and community network. Initially, she joined as a community member. Eventually, she became a contributing columnist and now works on the advocacy team. Jen says that while it was hard to let go of nursing, “I realized that while I couldn’t stand at a bedside anymore, I still had my experience, empathy and voice.” The opportunity to use her voice in a different way gave Jen a new-found purpose and a way to help her heal as well.
Making Connections
Connecting with other people living with the same condition or in similar circumstances can make a positive difference in your healthcare journey. Supportive communities provide space for acceptance and the ability to connect. Jen shares, “In many ways, the PAH community has turned something that once felt isolating into something deeply anchoring. It’s a reminder that even in the hardest moments, we are never walking this path alone.”
For Jen, this community extends to include her family and friends, her healthcare team, advocacy organizations and others working to advance research and care. Together, they form a network of support that continues to sustain her. She has found that sharing information about her disease and learning as much as she can has become a rewarding experience, providing her with the opportunity to feel like she has more control over her life. “Having a connection to the community means everything to me,” she said.
Reflecting on Her Journey
From those first days of mysterious symptoms and a life changing diagnosis to the community of support, care and advocacy she now thrives in, Jen reflects that “My life may look different from what I once imagined, but it’s led me back to what matters most: caring, connecting and making a difference.”
Jen’s experience highlights the importance of building a strong support system, staying engaged in your care and finding ways to connect and advocate within the PAH community. Each step, no matter how small, can help you become more empowered in your journey.
Blog last updated: May 5, 2026
