Colleen Steele,  —

Colleen was born and raised in New Jersey, and received a Bachelor of Arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life As A Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.

Articles by Colleen Steele

My Son Is Taking Over His Own Care Management

In last week’s column, I discussed my son Cullen’s transition from pediatric to adult care at a medical center not associated with his previous team. My focus has been on preserving the level and quality of treatment that led to almost six years of post heart and…

How to Survive a Medical Move

It was a bittersweet experience when my parents sold my childhood home. I grew up and left for college, and my parents were moving into the home of their dreams — life was moving forward as it should. But packing up memories and leaving the familiar hallowed halls of my…

How to Become Obsessed with Survival

Among the many challenges of living with a life-threatening condition are the daily demands it places on both the patient and the caregivers. A life-threatening illness isn’t something one can push to the back of the mind. Every day, people face the need to assess and address myriad symptoms, side…

Why I Speak For Cullen

The lyrics in Natalie Merchant’s song “Wonder” make me think of my son, Cullen: “Newspapers ask intimate questions / Want confessions / They reach into my head / To steal the glory of my story.” Not that there is glory in living with pulmonary hypertension (PH) or receiving a…

Coping with the Challenges of Change

We commonly think of change as a new experience. It can be unfamiliar and require effort to come to terms with, but it also can be a repeat of old challenges, forcing you to relive the past. Whether it comes in an old form or new, is welcome or not,…

Caring for the Caregiver

I have heard it said that self-care is not selfish. While I may agree with that consciously, my subconscious still has not quite embraced it. When my son Cullen was diagnosed with pulmonary hypertension (PH), we traveled from Washington state to California to seek help from a specialist. We…

I’m Celebrating a Year with You

“There is ebb and flow. Leaving and coming. Flight and fall. Sing and silent. Reaching and reached.” – Ally Condie I am unfamiliar with the author of that quote and her thoughts behind it. But as I prepared to write my one-year anniversary column, it grabbed my attention. The…

The Power of Words

Lately, I have been reflecting on the power of words. It started one sleepless night, as I wondered how often I have thought or spoken the words pulmonary hypertension since my son’s diagnosis. Even after his heart and lung transplant relieved him of that dreadful condition, not a day has…

The Mental Wellness Challenges of an Introvert

When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities. To help process all that was happening, they referred him to a…

The Real Red Band Society

In 2014, my son Cullen received a heart and double-lung transplant after a long battle with pulmonary hypertension (PH). Washington state was home, but for the first four months of recovery, we lived in California, close to the hospital where he received his transplant. Except for an occasional visit,…