Author Archives: Colleen Steele

How I Have Dealt With PH Mind Games

If you feel like pulmonary hypertension is messing with your mind, you are not alone. Over the years, many have expressed similar concerns.  I have been a member of a Facebook group called “Families of Children with Pulmonary Hypertension” since my son’s 2008 diagnosis, and…

It Takes All Types to Be a Caregiver

Are you a leader or a follower? Do you work well with routine or spontaneity? Can you muddle through mundane tasks or are you best when challenged with high-pressure situations? Do you like giving advice or prefer being an active listener? When my son Cullen was diagnosed with pulmonary hypertension…

Eli’s Long Journey to a Double-lung Transplant

The lives of pulmonary hypertension (PH) patients, transplant recipients, and their caregivers interconnect through our experiences and profound compassion for what we’re all going through. Sharing our journeys is like passing a torch from one person to another, helping to light the way through this dark disease. In an email…

My Son Wanted More Control Over What He Could Do

After receiving a heart and double-lung transplant in 2014, my son Cullen no longer has pulmonary hypertension (PH). Since then, he has been focused on protecting those precious organs. When asked about his PH days, Cullen is direct in his response: “It’s no longer a part of my life. I…

Surviving a PH Paradox Is a Tale Worth Telling

In 2008, when my son Cullen was diagnosed with pulmonary hypertension, I started a health journal on the website CaringBridge. I compare the pages of his medical journey to the opening paragraph of “A Tale of Two Cities” by Charles Dickens: “It was the best of times, it…

PH Made My Son Wise Beyond His Fears

My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). He spent much of his childhood in the hospital, talking to doctors, answering endless questions, and experiencing one traumatic event after another. It’s no wonder that Cullen and many other pediatric patients are commonly described as wise…

Why Can’t I Just ‘Get Over’ My Son’s PH Past?

“Why can’t she just get over it?” It would not surprise me if there were people asking themselves this question about me. Since receiving a heart and double-lung transplant six years ago, my son Cullen no longer has pulmonary hypertension (PH). Despite this dramatic change, I continue to advocate…

Let’s Learn Something New for Rare Disease Day 2021

According to NASA, the number of exoplanets, or planets beyond our solar system, is in the thousands and rising. Rare diseases are kind of like exoplanets. There are many, but unless you are a medical specialist, scientist, or patient diagnosed with one, you probably are unlikely to know much…