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.

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…

Walking the Transplant Tightrope for a Second Chance at Life

A pulmonary arterial hypertension (PAH) diagnosis can have a significant impact on someone’s life. Without treatment, a PAH patient’s health can rapidly decline and leave them facing a difficult future. Some may be eligible for organ transplant and are placed on a waiting list with enough time to actually…

There Is Still Hope for a Failing Heart

Up until age 6, my son Cullen was a healthy little boy. Earaches, wellness checks, and immunizations were the only reasons I took him to the pediatrician. So I was shocked when he began complaining that his heart felt funny and he was short of breath while exercising. Asthma was…

The Day the Music Lived

The emotions of an 11-year-old girl named Riley take on a life of their own in the 2015 Pixar movie “Inside Out.” In the animated film, the control center of Riley’s brain is headquarters for five emotions portrayed as the characters Joy, Fear, Anger, Disgust, and Sadness. They control…

California Couple Shares Their PHenomenal Love Story

A woman driving home from work becomes severely short of breath and dizzy. She pulls over into a “No Parking” area, which draws the attention of a parking enforcement officer. He calls for help, and she is rushed to the hospital. Five days and many tests later, doctors diagnose the…

PH and Periwinkle Go Together Perfectly

Pulmonary hypertension (PH) might look and sound like asthma, croup, chronic obstructive pulmonary disease, or a panic attack — but it’s not. It’s a rare, incurable, and life-threatening condition. The color of the PH awareness ribbon might look purple, lavender, violet, or blue — but it’s not. It’s a delicate…

Tips to Get Over the PH Diagnosis Hump

I enjoy hot peppermint mochas year-round. Going through the Starbucks drive-thru is my favorite daily routine and the only line I don’t mind waiting in. I use it as an opportunity to relax, pray, listen to music, scroll through my phone, read, or gaze out the window. The…