How to Advocate for Your PH Child’s Education
Pulmonary hypertension (PH) has a ripple effect on family life. A diagnosis is like a pebble tossed into water, its weight disrupting the calm with waves of change. My advice is to wade…
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. She lived in Washington State for 20 years 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 returned to New Jersey in 2023 after her loving husband of almost 28 years passed away.
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, through her column, to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].
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Ho no! Christmastime is here again!
“God Rest Ye Merry, Gentlemen” is one of the oldest Christmas carols. The lyrics, which have been altered numerous times to adapt to changes within the English language, are drawn from the Christmas story…
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Celebrating 5 Years of Living After Heart and Double-Lung Transplant
My son is celebrating a big transplant anniversary! Five years ago, on Aug. 7, 2014, he received a heart and double-lung transplant. This very rare surgery was completed within seven hours, and from…
The ‘Healthy’ Sibling’s Struggles with PH
The siblings of medically frail children grow up fast because they witness harsh realities at an early age. They experience emergencies, hospital stays, medical equipment, and scary treatments, and have no choice but to…
How PH Changed Me, from Being More Compassionate to Managing PTSD
When my son was diagnosed with pulmonary hypertension (PH), I noticed a change in how people interacted with me. They hesitated before sharing personal problems, and if they did share, they would often…
My Son’s Transplant Fundraiser Helped to Build a Community
Two positives came out of my son’s pulmonary hypertension (PH) diagnosis: It strengthened my belief in the power of prayer and rekindled my faith in people. My family has personally witnessed the kindness and…
How I Learned to Keep the Faith After My Son’s Diagnosis
Almost 10 years ago, my husband and I were sitting in a pediatric cardiologist’s office with our son awaiting the results of an echocardiogram. The doctor described in simple terms a disease…
The Therapeutic Benefits of 40 Years of Journal Writing
As a little girl, I developed a huge crush on the character John Boy from the television drama “The Waltons.” I was attracted to his aspiration of becoming a novelist, and my favorite…
My Son’s Transplant Experience Taught Me That Practice Makes Perfect
Due to pulmonary hypertension (PH), my son was on the transplant list for almost a year when he received the call that a heart and lungs were available. We were prepared for an…
Taking Turns While Sharing Responsibility for Our Son’s PH Care
When my husband and I said our vows, “To have and to hold … in sickness and in health,” we had no idea to what extent that promise would be tested. Our child’s diagnosis…
Walking Together: My Sons’ High School Graduation Was Extra Special
My son’s pulmonary arterial hypertension (PAH) was idiopathic, which means it developed suddenly with no known cause. He was healthy until he became symptomatic at 6 years old. Before then, we only brought…
The Hidden Truths About My Strength
I wish I had a dollar for every time I’ve been described as strong, but what if people knew my weaknesses, unfathomable sadness, and heartbreaking mistakes? As a caregiver to my son, I’ve had…
Am I a Caregiver or a Mom?
I struggled with the title for my column because what I write about will be from my perspective as caregiver to my son. However, using the word “caregiver” was bothering me because who I…
