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…
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 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.
Featured Post
Good grief, it’s time to return to raising PH awareness
It’s been a while. Do you remember me? I fell silent in June 2023 after sharing a column titled “How I am coping since my husband passed away.” I’m an only child to aging parents, Mom, 86, and…
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People With Different Rare Diseases Share Common Struggles
Second in a series. Read part one. In last week’s column, I shared the inspirational story of Cassidy Huff. Cassidy and my son Cullen became friends through the Make-A-Wish Foundation 12 years ago. When they met,…
Cassidy Huff Doesn’t Let Expectations Get in the Way of Finding Joy
First in a series. Those in the pulmonary hypertension (PH) community often refer to each other as PHamily. They don’t live under the same roof, but they do have a strong understanding of what life is like for other…
Take Care of the Aging Caregiver
Why do some people look younger the older they get? Not me! I turned 49 yesterday, but the woman in the mirror looks much older. I recently read an article that compared pictures of U.S. presidents from the…
Making the Difficult Decision Not to Attend a Funeral
“Many have credited my husband, Brian, and me as the sturdy trunk supporting our little family tree. But a tree is only as strong as its roots, and ours are as strong as they come. Without the frequent and…
Maintaining a Healthy Relationship Between Doctor and Patient
One-sided relationships are unhealthy, so why have one with your doctor? It’s important for both patient and doctor to be committed to establishing an open, honest, and respectful rapport. From pediatric care to adult care, I have guided and…
Creating Your Own Recipe for Lemonade
When my son Cullen was diagnosed with pulmonary hypertension (PH), my husband and I would have gone to the ends of the earth to help him fight it. When asked if we would be willing to drive from our…
Creating Space Between Peace and Anxiety
Have you ever nodded off at an inappropriate time? For a moment, your body gives in to fatigue. Your heavy eyelids begin to droop, and you start to ease into a peaceful slumber. It’s all going well until you…
Medication Compliance and Patient Advocacy Are Big Pills to Swallow
Learning how to take medications can be a hard lesson for children, but my son Cullen managed it like a champ when he was diagnosed with pulmonary hypertension (PH). I know adults who struggle to swallow pills, but at…
Experiencing the Other Side of Organ Donation
On Aug. 7, my son Cullen celebrated his six-year anniversary of having a heart and double-lung transplant. In last year’s anniversary column, I shared the joys and struggles that come with this miraculous gift. Taking care of…
Life as a Caregiver Is Worthy of a Reality TV Show
When driving to doctors’ appointments for my son Cullen, we often listen to “The Danny Bonaduce & Sarah Morning Show.” They make us laugh, and we enjoy the topics. Last week, we were headed to an appointment when…
The Power of Persistence When Battling Health Insurance
If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six years post-transplant without running into…
