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 PTSD Has Affected My Self-care

My son Cullen is 22, and I’ve been his primary advocate and caregiver for 14 of those years. I’ve seen him through pulmonary hypertension (PH) and heart and double-lung transplant recovery, and I continue to support him as he approaches eight years post-transplant next month. You would think…

Celebrate Helen Keller Day With Optimism

On this day in 1880, a healthy baby girl named Helen Keller was born. When Helen was 19 months old, a febrile illness with no known cause struck her. Historical biographies speculate she had rubella, scarlet fever, encephalitis, or meningitis. Whatever the illness, it left Helen blind and deaf, and…

My Sons Share Their Father’s Day Reflections

Experience has taught my husband, Brian, and me that life is what you make it, but you don’t always get to choose the ingredients. We have put a lot of love and other wonderful things into raising our sons Cullen, 22, and Aidan, 21. Pulmonary hypertension (PH) wasn’t…

I’ve Made a Mental Note to Take Care of My Mental Health

As a co-moderator for the Pulmonary Hypertension News Forums, I’ve encouraged and taken part in many hot topics over the past three years. During that time, I’ve noticed one topic resurfaces often, and it always triggers great responses. Mental health and wellness spur a conversation that pulmonary…

Tips on How to Handle PH and Transplant Baggage

What is baggage? According to Merriam-Webster, it’s one of three things: suitcases, transportable equipment, or intangible things such as feelings and circumstances that get in the way. What kind of baggage do people living with pulmonary hypertension (PH) often take everywhere they go? The answer: all of it! In…

Don’t Picture My Son With PH

They say pictures are worth a thousand words, but sometimes they can be a one-sided conversation. Some photographers tell better stories, but it’s usually up to the observer to gather hints from the picture to understand what’s going on. Smiling people must be happy. Crying people must be sad.

Hospitals Grow Good People

Graphic artist and children’s book illustrator Mary Engelbreit helped popularize one of my favorite inspirational phrases, “Bloom where you are planted.” Through colorful illustrations and uplifting phrases, she inspires others to find joy, humor, hope, love, and beauty wherever they are in life. But what if you’re in a…

Practicing What I Preach Is Advice Worth Taking

I happened upon a meme of a cat lying flat on its belly, ears pulled back on alert, chin resting between two tense paws, and eyes wide with a look that could kill. The caption read, “I’m so calm, happy, and well-rested — said no caregiver ever!” My ability to…


A Conversation With Rare Disease Advocates