Three Years Searching for Answers: Jenna’s PAH Story
Co-authored by Jenna Mazor
December 2nd, 2025
Living with a rare disease can mean years of uncertainty before answers finally appear. For Jenna, the journey to her pulmonary arterial hypertension (PAH) diagnosis was long, exhausting, and often isolating. But her story is also one of persistence, self-advocacy, and the hope that education can change outcomes for others.
A Subtle Start That Became Impossible to Ignore
Jenna first noticed something wasn’t right when her daughter was six months old. It was 2020, lockdowns, stress, the swirl of new motherhood. When she felt a consistently elevated heart rate, doctors reassured her that it was likely anxiety. As months passed, her symptoms expanded: chest pain, heart palpitations, and eventually breathlessness. The message never changed: “You’re anxious. You’re unfit. Try exercising more.”
Jenna did exercise more. Five days a week. Hard. But instead of improving, her breathlessness worsened, a red flag she couldn’t ignore any longer.
After years of being turned away, Jenna insisted on seeing a cardiologist despite warnings about the cost and the likelihood of “nothing being wrong.” For Jenna, peace of mind was worth it.
That appointment became the turning point. A routine echocardiogram revealed signs of pulmonary arterial hypertension. And though the news was delivered bluntly, leaving Jenna frightened and overwhelmed, it finally gave shape to what she had been experiencing for years.
Later that day, searching online, she saw frightening prognoses and wondered whether she would see her daughter grow up. It was one of the hardest moments of her life.
Reflecting on a Delayed Diagnosis
From first symptoms to diagnosis, more than three years had passed. Jenna often wonders whether earlier recognition could have slowed her disease progression. While she can’t change the past, she’s determined to use her experience to help shorten that journey for others.
For Jenna, regular monitoring at a centre of excellence in Melbourne is essential, but she knows her situation is more accessible than many others face. In Australia, specialist care is concentrated in major cities, leaving rural patients to travel long distances or fly for routine reviews. For people already unwell, or financially stretched this becomes another barrier in a disease that already demands so much.
That’s why Jenna sees enormous value in tools that allow patients to track their condition between appointments. Being able to monitor symptoms at home isn’t just convenient, it provides reassurance and can trigger earlier clinical support when something changes.
Jenna is open about her journey because she wants primary care clinicians to recognise PAH earlier, and because she hopes other patients won’t be dismissed the way she was. Her message is simple:
Listen when patients say something feels wrong. Investigate early. It can save years, sometimes lives.
Alone at home later that day, she turned to Google, like so many do and found a headline claiming a life expectancy of two to five years. Staring at her young daughter, the weight of those numbers was crushing.
A Diagnosis Years in the Making
From her first symptoms to her eventual diagnosis, roughly three and a half years had passed, years in which PAH quietly progressed.
Jenna still wonders how much difference earlier recognition might have made. Could earlier treatment have slowed her disease? Could the most frightening moments have been avoided? These questions don’t come from regret, but from a desire to ensure that others don’t face preventable delays.
Living in Australia brings unique barriers. PAH centres of excellence are clustered in major cities, leaving many patients to travel long distances for specialist care. For those too unwell to work, or dependent on oxygen, this becomes more than an inconvenience: it’s a barrier to consistent monitoring.
Even for someone living within a city, like Jenna, the six-month wait between specialist reviews can feel long. Each new symptom raises questions: Is this a flare? A progression? Something urgent?
Tools that empower patients to track symptoms and lung function remotely aren’t just a convenience, they’re reassurance, autonomy, and in some cases, early warning.
Despite the challenges she’s faced, Jenna is deeply motivated to help others. Whether advocating for education among primary care doctors or supporting newly diagnosed patients online, she hopes her experience can shorten someone else’s diagnostic journey.
Her message is clear:
When patients say something feels wrong, listen. Persist. Investigate.
Early recognition can change everything.
