Sometimes when I think about the symptoms of pulmonary hypertension — dizziness, shortness of breath, dry cough, and chest pain — I wonder if my diagnosis had just been waiting a decade to hear its name.
When I was in my teens and early 20s, I loved the rush of flying down a mountain slope with all my might, increasing my speed with each run. And even though I’ve only had this experience a handful of times, each trip is seared on my brain. I will never forget the glorious views as the medevac helicopter flew over the San Bernardino Mountains on its way to the county hospital. After a day of snowboarding followed by a night full of coughing and only a few minutes of sleep, my friends took me to the local infirmary where my breathing became so belabored that air travel was the fast way off the mountain. This was the winter of 2006, a full decade before pulmonary hypertension knowingly walked into my life.
The diagnosis at that time was high-altitude pulmonary edema (HAPE), a reaction to the lack of oxygen while exerting myself at such great heights and something fairly common in hikers. Doctors called for oxygen and diuretics to drain the fluid from my lungs and restore my oxygen saturation to normal levels. During this four-day hospital stay, the doctors thought I was a curious patient and weren’t sure what to make of my condition. After all, with the mountain’s stature at roughly 7,000 feet, it was thought that my altitude sickness shouldn’t have been so severe. But I responded to the medication and I was sent on my way. Not a single word was spoken of PH.
Flash forward to the winter of 2008 and a weekend trip to Lake Tahoe with friends that consisted of a snowshoe trek at the base of a mountain followed by a night of troubled sleep. The next morning, I didn’t have the energy to drive my car back to Sacramento, so I asked my roommate to drive us home. I knew my body — or at least, I thought I did — and figured some lower altitude and cough medicine would set me right. Instead, my roommate — who was correct to worry — took me to the hospital. At this point, I felt like I knew enough to tell the doctors my symptoms and the appropriate course of action, as I was keen on making it to work that week. Who was I kidding? More diuretics to flush the fluid, oxygen to stabilize me, lots of questions about my medical history (are you sure you don’t have asthma) and a week of recovery in yet another hospital bed. HAPE had struck again.
And since life tends to come at us in threes, I would be remiss if I failed to mention a brief hospitalization in June 2012 after a short weekend stint in Albuquerque, New Mexico, to celebrate my cousin’s wedding. Foolishly, I thought I could go to work upon my return Monday morning and make it through the day. Halfway through it, I went to the student clinic (I was in graduate school at this point) to get some oxygen, only to be transferred to the hospital across the street and admitted for HAPE.
The same tedious questions from doctors and my same tired responses, and the same course of treatment. It didn’t matter if I was on the country’s west coast or the east coast, it all became fairly routine. From my perch in a hospital bed, I would talk about not having asthma — even though my siblings had it — about having scoliosis, and about being two months premature at birth. Three hospitalizations, dozens of doctors, the same diagnosis, and not a single test for, let alone discussion of, pulmonary hypertension.
Perhaps I could have kicked this Groundhog Day-like pattern by staying clear of any altitudes higher than sea level. While each episode occurred at a lower altitude than its predecessor, the symptoms seemed to come quicker each time. I could kick myself for not pre-empting the altitude sickness with proper medication.
After the incidents in Tahoe and Albuquerque, I did a series of pulmonary function tests that showed normal results that tracked with my medical history. It’s no secret that the symptoms of PH often disguise themselves as some other respiratory condition or pulmonary illness, but I started to wonder if these episodes strung together, my own primetime medical drama. It would take another four years and one hospitalization for the dots to possibly connect to something more consequential.
I can’t say that PH was the cause of that first hospitalization because it was never part of the discussion. The answers we look for can often evade us when we don’t know the right questions to ask. This is not to slight the stable of talented doctors I saw over the past 10 years, but rather to underscore the importance of advocacy and awareness efforts when you’re dealing with PH or any chronic disease. But through the work of organizations like the Pulmonary Hypertension Association and more conversations among patients, caregivers, doctors, researchers, and funders, and more people telling their stories, PH will blend in less with other diseases that aren’t so rare.
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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.