Why I PHight: Raising Awareness This November

Did you know that I have a new appreciation for street corners? I remember when I would attempt to cross the street as a red No. 2 flashed into a blinking hand, and my foot would touch down on the opposite curb just as a car flew by. These days I take my time, often letting the traffic light cycle once or twice. I stand there as people rush by, catching my breath and filling my lungs with air. There are days when a two-block walk feels like a 10K run.

Discussing my affection for street corners is one avenue that might help people understand how pulmonary hypertension affects my life on any given day. I try to be patient when talking to people about pulmonary hypertension — with a warm reminder that PH is still new to me and I’m constantly learning something new about this rare disease.

PH is elevated blood pressure in the arteries of your lungs. As the pressure increases and it becomes harder to move blood through the lungs, the right side of the heart must work overtime to get that blood through. This can lead to right-sided heart failure. I’ll never forget how heart failure crept up on me in the fall of 2015. At the time, it was a slow-burn of a process until eventually, one morning, the chest pains felt like I was scaling Mt. Everest. I checked myself into urgent care, a move that would ultimately result in my PH diagnosis.

Until my diagnosis, I always associated the term “PH” with my high school chemistry class. Sitting in the bed listening to the doctor explain the intricacies of PH, the disease, my mind clouded over as I tried to piece together this eight-month journey from asthma, to pneumonia, to PH. A swirl of macabre thoughts moved through the first of my post-diagnosis months. I was 32 at the time with a bucket list full of unchecked boxes, 100 percent unsure I would even get to a handful of the far-off places I still wanted to see with my own eyes. These lungs still had some international air to breathe.

Much of my initial fear in the aftermath of the diagnosis stemmed from a lack of certainty. To remedy this, I took a page from my own professional background and looked at my diagnosis through the lens of public policy advocacy. One of the first steps taken in pursuit of change is awareness. Last month, I tweeted that #WhyIWrite is to raise awareness about PH and the challenges of living with a chronic illness. I have written previously on how stories from other #PHighters, living with a disease that brings on limitations that can feel like a claustrophobic nightmare, helped me find perspective. Through their words, people from all backgrounds showed me that it was not only bearable, but possible, to live in what post-diagnosis life is considered a new normal.

November is Pulmonary Hypertension Awareness Month, the perfect time to advocate, raise awareness, and tell stories full of PHighting Words. I believe in raising awareness because I want more people — including those in the medical community — to have a better understanding of this rare disease. PH is often misdiagnosed. Perhaps, through greater awareness, education, and advocacy, fewer patients will be spared the long, painful, and confusing road to proper diagnosis.

There is currently no cure for PH. It is a progressive disease and each person manages with an individual treatment plan; for instance, I take a regiment of prescription pills to keep the arterial pressures down. The medications are working for now, and I have regular appointments with my pulmonary doctor to track my progress in my PHight. In the absence of a cure, however, there is hope. It is the hope that beats at the heart of any and all efforts to improve people’s lives with PH through research, advocacy, and building a community of patients, doctors, caregivers, care providers, and others to help find a cure.

There is always something new to learn about PH. Maybe it is the idiopathic nature of my own diagnosis that draws me to that observation. I feel like I am shedding new light whenever I visit or communicate with my doctors, seeing this disease through a new lens. Even if the knowledge makes me uneasy or angry, it helps move me on my journey.

I would like to help raise awareness this month by answering any non-medical questions that readers might have that I can explore based on my own experiences. Please leave a comment here or tweet me @mnaple.

For those readers interested in promoting awareness about PH, the Pulmonary Hypertension Association just began The Right Heart Campaign, a new effort featuring stories of children and adults living with PH and a toolkit to promote greater awareness and hope.

Let’s keep sharing, advocating, and using our PHighting words to tell our stories.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.