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.

What Is Your Identity Outside of Patient or Caregiver?

My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). During his pediatric PH years, I had the pleasure of meeting other children just like him. Kids who liked to have fun, learn new things, and express themselves through talents they were just discovering. Young people who…

Learning to Laugh at Embarrassing Medical Moments

Being human makes everyone susceptible to embarrassing moments. Some have learned to deal with them by laughing at themselves. Facepalm-worthy fumbles happen, even when dealing with something as serious as a rare disease. Medical faux pas might sound like no laughing matter, but in my experience, they can offer comic…

I’m Working on Accepting the Risks of Imbalance

  When I look at my Christmas tree, I appreciate its Christian symbolism as much as I do its beauty. There are many meanings passed down throughout history, but I have my favorites. The triangular shape represents the Holy Trinity and the upward-pointing branches are symbolic of my praise…

PH and Transplant Strengthened a Brotherly Bond

My sons are 13 months apart and affectionately referred to as “Irish twins.” Cullen is 21, and Aidan just turned 20. My husband and I hoped that having them close in age would foster a close friendship for life. But different personalities and a rare disease placed a gap…

A Little Effort Is Worth the Christmas Joy

It’s been a long, difficult year, so let’s make up for it with over-the-top Christmas cheer. We should decorate our homes from floor to ceiling, and ground to rooftop. Bake, cook, watch holiday movies, listen to carols, buy lots of gifts, wrap them up, display them under the tree, open…

Life Is Worth the Picture

Life with pulmonary hypertension was far from picture perfect, but I always took snapshots anyway. No filters, just life the way my own eyes had seen it. I captured reality from all angles: the pleasant and the painful, the boring and the extraordinary, the successful and the disappointing, the predictable…

Reflections From a Thankful Caregiver

Are you a pulmonary hypertension (PH) caregiver? If so, then November has been your special month. Thanksgiving is celebrated this week in the U.S., and all month there has been a focus on PH awareness and on many of you. That’s right — on many of you — because…

As Cullen Turns 21, We Celebrate Another Milestone

Adulting is hard. As children, we look forward to the freedom to make our own decisions, but being responsible for ourselves isn’t always as satisfying as we thought it would be. Even those blessed with a supportive family and friends are still affected by the choices they make. There are…

Finding Balance Between Optimism and Pessimism

There are times in life when I believe it is necessary to sit on the fence between optimism and pessimism. A pulmonary hypertension (PH) diagnosis and the battle that follows is one of those situations. My husband, Brian, recently put a creative spin on this perspective when he participated…

30 Days to Be Thankful and Aware

November is a special month for many. It is a time to gather with friends and family, and share a meal, memories, current events, and hope for the future. Now is the season for reflecting on our lives and being mindful of what we have to be thankful for. Feeling…


A Conversation With Rare Disease Advocates