When I was 6 years old, I was entered into a clinical trial for Tracleer (bosentan). At the time, the pulmonary hypertension (PH) community was pushing to have this drug approved for pediatric use, which made me an ideal candidate. Twenty years later, this drug is a…
In the spring of 1999, at the age of 3, I developed a hoarse voice. My mother thought that maybe I had a cold, so she brought me to my pediatrician for a checkup, expecting a prescription for antibiotics at most. This was the first of many misunderstandings about my…
Nothing makes me crankier than walking into the ER any time after 9 p.m. Lying on a stretcher that feels more like cardboard than a mattress, with fluorescent lights burning a headache into my temples, will have me missing my bed at home in an instant. It’s an experience I’ve…
I take note of several things as I walk the familiar route through the three different hospital wards on my floor. Pushing an IV pole, my eyes scan my surroundings as Taylor Swift sings loudly in my oversized headphones — the universal alert that says, “Please don’t talk to me.”…
“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…
Get regular updates to your inbox.