“And if the oral antibiotic doesn’t work, they did mention they might want to do an IV antibiotic with a PICC line. But we’ll cross that bridge when we come to it.” My mom reluctantly tacked this onto the end of our discussion. She had been summarizing a conversation…
Four weeks before I entered my freshman year of college, I was being evaluated for a heart-lung transplant due to pulmonary hypertension (PH). Little did I know that I would spend the next four years managing these very separate journeys alongside each other. During this time, I think…
“Anna’s an artist,” my mom explained to my nurse on my behalf, during those months when I didn’t have a voice myself. “Oh, that’s awesome!” he exclaimed. “Do you do Inktober?” I shook my head no, and the conversation fizzled. I’m not sure why this exchange stuck with me following…
Illness is a beacon — it draws eyes, attention, and intervention. Doctors. Caregivers. Interns invited into the room to observe a rare illness they might not see again in their career. All of them turned their eyes to me when I was young, and they have yet to look away.
“No! She can’t take off her backpack! She has to wear it or she could die!” The emotional exclamation echoed throughout our elementary school gymnasium. The protest came from a classmate of mine. We had known each other through all of grade school, and he had grown very protective of…
When the technician leaves the room following my echocardiogram to ensure that all of the proper images have been collected, my mom and I pick up the game quickly. Looking at the mural that spans the wall across from us, we each count the number of cars, people in…
It happens often — probably more than I’d like to admit. In a moment of daydreaming, I’ll picture myself doing something both ordinary and unimaginable. On a crisp morning, perhaps, I awake and throw a sweater over my pajamas. I meander downstairs, stopping in the kitchen only long enough to…
When I was 8 or 9 years old, the alarm of my IV pump went off in the middle of dance class. When you’re placed on an IV medication for pulmonary hypertension (PH), you are heavily educated on its short half-life and the reality that any pause in medication…
Over the years, I’ve become familiar with it: the discomfort that others feel in the face of the incurable. When sharing my story, the sum of responses consistently averages to something similar: “Will you always need to have a trach?” “When can you get rid…
The alarm sounds at an absurd hour on those days of the year when I am always up earliest. No food or coffee. And only enough water to take my morning medications. The commute is usually long and quiet. My mom drives while I rest, my headphones firmly in place…
When I was deciding which college to attend, my health was declining because of pulmonary hypertension (PH). That made my college decision — which for most people is marked by excitement and opportunity — clouded by my needs for accessibility and support. A few weeks before making…
Pulmonary hypertension (PH) patients use several analogies to describe what it feels like to live with the illness each day. One example is that it’s akin to breathing the air at the top of Mount Everest. Another is that the exhaustion makes us feel like we’re constantly running a marathon.
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