My husband, Brian, was born on his parents’ wedding anniversary. As a child, he disliked sharing his special day with them, but he grew to appreciate the connection. When I informed Brian that November is Pulmonary Hypertension (PH) Awareness Month and National Family Caregivers Month, he noted that…
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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…
I think of birthdays and New Year’s Eve as self-awareness holidays. People often use these holidays to make resolutions for personal change and better life choices. November is Pulmonary Hypertension Awareness Month. During this time, we advocate for pulmonary hypertension (PH) diagnosis, treatment, and care. With…
My two favorite female singers, Celine Dion and Carrie Underwood, have songs about love and the power it holds. Dion belted out the following lyrics in her timeless classic “The Power of Love”: “We’re heading for something/ Somewhere I’ve never been/ Sometimes I am frightened/ But I’m ready…
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,…
