Life as a Caregiver — Colleen Steele

When my son Cullen experienced a fast and critical decline in health after six years of battling pulmonary hypertension (PH), he received a heart and double-lung transplant. Recovery from the surgery was difficult, and the past eight years following transplant have brought various challenges. But Cullen’s dog, Mellow,…

It’s beginning to feel a lot like the day after Christmas. Hopefully, that feeling is joy, but if it isn’t, what’s bothering you? Were symptoms of pulmonary hypertension making you too ill to go anywhere or do anything? Did the holiday not go according to plan? Maybe…

Imagine you’re walking through an open field. It’s quiet except for the faint trickle of a nearby stream and a rumble that sounds like thunder in the distance. The thunder seems to get closer, and soon you realize it’s the sound of galloping hooves. Expecting to see wild horses run…

Slowly, you begin to ascend. At first, you can’t even see the apex of your destination, so already you’re feeling anxious. As the climb steepens, you feel ambivalent, wanting to brave it out but also wondering if it’s too late to get off this ride. At the top, your stomach…

Selecting a coloring book wasn’t something I rushed as a child. Testing my parents’ patience, I would carefully page through many books until I found the perfect one with the most appealing pictures. I intended to color every drawing in the book, so selecting the right one was important, and…

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…

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…

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…

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…

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,…

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…

In 2008, my then 8-year-old son, Cullen, was diagnosed with pulmonary arterial hypertension (PAH) following a right heart catheterization procedure. I spent much of that night researching, taking notes, and writing questions and concerns about this rare and incurable disease, which I’d never heard of until that day. The…