Life as a Caregiver - a Column by 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.

How I am coping since my husband passed away

I thought I knew how I grieve. I’ve lost many loved ones over the years, including those in the pulmonary hypertension (PH) and transplant communities. Each death hit my heart with varying degrees of force, but the grieving process was always familiar. I found comfort in being…

Answering the call: What emergency responders do, Part 2

Second in a series. Read part one. According to the Online Etymology Dictionary, “emergency” is derived from the Latin word “emergere,” which means to come forth, to rise up and out. That is what our brave emergency responders do. They rise up, emerge, and help patients and caregivers…

Answering the call: What emergency responders do, Part 1

First in a series. The rare disease community has an abundance of compliant patients and proficient caregivers. We do our best to avoid serious medical emergencies but are wise enough to know that we must also prepare for them. Important healthcare information and prescription lists are diligently maintained…

My Son Would Like to See Everyone Get Over His PH

As babies, our first steps were probably acknowledged with exaggerated praise. Since then, however, not every step forward has been applauded. Wouldn’t it feel awkward if they were? My son Cullen received a heart and double-lung transplant in 2014 after pulmonary hypertension (PH) caused a critical decline in…

Words of Comfort Upon Losing an Emotional Support Dog

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,…


A Conversation With Rare Disease Advocates