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.

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 year they were sworn in to the year they left the…

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 encouraged my own son to initiate healthy bonds with his medical…

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 home in Washington state to California to seek care and treatment…

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 are jolted awake by the force of your head dropping like…

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 new organs is an enormous responsibility. The reality that Cullen would…

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 show asked listeners to “call in and share which profession…

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 any major health coverage roadblocks. Any issues were quickly resolved with…