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Unless you live with a chronic illness or care for someone who does, it isn’t easy to wrap your head around how much time it takes to manage a disease. A few months ago, I asked members of our Pulmonary Hypertension News Forums, “What makes your health a…

New research shows an increase in pulmonary hypertension (PH) mortality rates, and we must respond with the force of a dazzle of stampeding zebras. The study, “Pulmonary hypertension mortality trends in United States 1999-2019,” published in the Annals of Epidemiology and the topic of a recent Pulmonary…

Take a walk with me. Our senses are awakened the moment we step outside. The sun feels comforting, but a brisk breeze suddenly sends a chill through us. We are reminded that we have stepped out into a season of transition. Most trees are already bare, but some are still…

“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…

When my son Cullen, 22, was diagnosed with severe pulmonary hypertension (PH) in 2008, he didn’t look sick. People couldn’t see the severely enlarged, overworked heart and sickly lungs struggling to breathe. “He looks so healthy,” we were often told. There is no cure for PH, but…

I hate communicating with automated phone systems. I hate that advancing to the next stage of the process to get what I need depends on how the automated program understands the sound of my voice and the cadence of my words. I hate the way I feel when the stutter…

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.

It’s easy to compare friendship to a favorite painting or song when making a personal connection through experience, emotion, fear, or hope. But allow me to take the comparison a bit deeper. You don’t need to meet an artist to feel moved by their painting or lyrics to a song,…

“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…

Before I could process the sharp sound, people were already sprinting onto the field. I watched in disbelief as spectators jumped over the railings while players scrambled to bring fans off the field into the safety of the dugout. As the chaos unfolded and more people reacted with fear at…

My family has grieved the passing of many people over the years. Some died peacefully from natural causes, too many were taken by pulmonary hypertension (PH) and other diseases, and a few left this world both suddenly and tragically. Ages have ranged from the very young to the very…

As I debated what to write this week, I struggled for days. Continuous brain fog makes the decision difficult more often than not. My brain fog presents as lapses in memory, in which I forget what I was saying or other simple tasks. The icing on the cake is…