Life as a Caregiver Is Worthy of a Reality TV Show
When driving to doctors’ appointments for my son Cullen, we often listen to “The Danny Bonaduce & Sarah Morning Show.” They make us laugh, and we enjoy the topics. Last week, we were…
Life as a Caregiver — Colleen Steele
Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. 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 forum 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. Her ambition is to educate and inspire others facing similar challenges and encourage them to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].
Featured Post
Welcoming my son as the newest PH News Forums moderator
There are two sides to every story. For six years, as both a forums moderator and columnist for Pulmonary Hypertension News, I have shared my son’s pulmonary hypertension (PH) and transplant…
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The Power of Persistence When Battling Health Insurance
If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six…
Surviving the Stages of Grief Caused by a Life-threatening Illness
It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two…
Rooted in the Love of Cullen’s Grandparents, We Are Strong
About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing the cause. Finally, we discovered he had idiopathic pulmonary hypertension…
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…
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…
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…
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…
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…
Ronald McDonald House Charities Responds to Epidemic Challenges
When my son was diagnosed with pulmonary hypertension, we drove from our home in Washington state to California to seek care from a specialist at Lucile Packard Children’s Hospital Stanford (LPCHS). A social…
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…
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…
