Author Archives: Colleen Steele

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…

Rooted in the Love of Cullen’s Grandparents, We Are Strong

About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing the cause. Finally, we discovered he had idiopathic pulmonary hypertension (PH). Although relieved to finally have a name for his condition, the challenges associated with PH…

My Son Is Taking Over His Own Care Management

In last week’s column, I discussed my son Cullen’s transition from pediatric to adult care at a medical center not associated with his previous team. My focus has been on preserving the level and quality of treatment that led to almost six years of post heart and…

How to Survive a Medical Move

It was a bittersweet experience when my parents sold my childhood home. I grew up and left for college, and my parents were moving into the home of their dreams — life was moving forward as it should. But packing up memories and leaving the familiar hallowed halls of my…

How to Become Obsessed with Survival

Among the many challenges of living with a life-threatening condition are the daily demands it places on both the patient and the caregivers. A life-threatening illness isn’t something one can push to the back of the mind. Every day, people face the need to assess and address myriad symptoms, side…

Why I Speak For Cullen

The lyrics in Natalie Merchant’s song “Wonder” make me think of my son, Cullen: “Newspapers ask intimate questions / Want confessions / They reach into my head / To steal the glory of my story.” Not that there is glory in living with pulmonary hypertension (PH) or receiving a…

Coping with the Challenges of Change

We commonly think of change as a new experience. It can be unfamiliar and require effort to come to terms with, but it also can be a repeat of old challenges, forcing you to relive the past. Whether it comes in an old form or new, is welcome or not,…