Steve Smith sat across from his primary care doctor, eagerly waiting for his symptoms to finally be paired with a diagnosis. Although his symptoms weren’t constant, he knew deep down something was wrong.
Steve was experiencing a rapid heartbeat during exercise and shortness of breath. He knew these symptoms could indicate a range of diagnoses. The broad spectrum of potential causes made it difficult to pinpoint the exact issue, especially since the symptoms could overlap with common and uncommon conditions.
“Well, for some reason, you just get nervous going up the stairs,” the doctor suggested.
Steve was taken aback by this suggestion and immediately knew it wasn’t right.
“No, I don’t. I don’t get nervous walking upstairs. My heart races abnormally when I walk upstairs,” Steve said to his doctor. “I can’t run anymore. My heart’s racing when I lift weights. I’m not in bad shape. I’m not overweight. Something is wrong.”
For years, Steve’s medical visits went on like this. His medical journey began around 2010 and 2011, but he was consistently being misdiagnosed. Initially diagnosed with anxiety, and later asthma, he was handed an inhaler that didn’t help.
“Where the misdiagnosis started, it’s kind of blurry for me,” Steve recalls. “I was telling my doctor that something didn’t feel right, but I wasn’t articulating it very well.”
Despite these setbacks, Steve continued pushing for answers. Every year, he brought up his symptoms during physicals, urging the doctors to dig deeper. Yet, no diagnosis made sense.
“I had moments of defeat,” Steve admits. “I felt like they’re not going to find it, or something bad is going to have to happen, and then they’ll discover it.”
Not only was Steve fighting for a diagnosis that made sense, but he also was dealing with a mental battle. He was worried he might suffer a heart attack or worse before getting the correct diagnosis. But he also began doubting himself.
- Am I a hypochondriac?
- Am I making this up?
Determined, Steve switched primary care doctors and consulted various specialists.
“I changed doctors midway through some of this, and my new doctor was listening to me with fresh ears and fresh eyes, looking at all the things that had been ruled out. I wouldn’t let him quit looking,” Steve shares. “It’s really funny, in recent years, he’s told his interns, ‘Steve was persistent with me, and as a result, we kept testing and testing and testing.’”
Finally, in 2019, nearly nine years after he first raised concerns, Steve was properly diagnosed with Pulmonary Arterial Hypertension (PAH). In this rare condition, the arteries in the lungs become narrowed, leading to high blood pressure and causing the heart to work harder to pump blood, states the Mayo Clinic.
Suddenly, the misdiagnoses were over, but a new journey began.
“For me, it began a journey of education, research, asking my doctor questions, and looking at the various medications that are available for it,” Steve says. “And then I read there’s no cure for this. They’re not going to fix it. It’s just going to have to be managed.”
With a clear diagnosis in hand, Steve embraced the challenge of managing his condition. He committed to learning everything he could about PAH and the treatments available. This new phase required not just medical management but also a mental shift, accepting that while there was no cure, there were ways to live a fulfilling life despite the condition.
Steve, a father of three adventurous daughters, initially hesitated to share his health updates with them. Now, his wife and daughters are his biggest support system. He also joined PAH groups since his diagnosis and has found strength in the community.
Today, Steve lives in Sterlington, Colorado, and is the College Administrator and Vice President of Student Services at Northeastern Junior College. Despite his journey, he has found his way back to the stage–to his passion–as a member of the Sterling Miracle Players. He has played roles in Grease, Mamma Mia, Chitty Chitty Bang Bang, and Something Rotten. Though still navigating challenges, he continues to pursue his passions while managing PAH.
On a mission to help others, Steve is participating in the newly launched campaign, Outnumber PAH, which highlights the importance of developing a strong and resilient support system to help those with PAH manage challenges associated with the condition.
Steve’s story is a powerful reminder of the importance of self-advocacy in healthcare. He encourages everyone to advocate for themselves because no one else can do it better. His relentless pursuit of answers and refusal to give up ultimately led to a life-changing diagnosis, allowing him to manage his condition and continue living his life.
“I didn’t know what was wrong with me. I just knew something was wrong,” Steve says. “If I had just said, ‘Well, I guess they’re not going to find anything,’ I wouldn’t have got started on treatment as early as I did. Now, I would have liked that treatment to have started five years earlier, but it started, which is better than never.”
