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.

Waiting Room Warriors Battle Worry and Fear

It is said that good things come to those who wait. But when you are waiting for a loved one to get out of surgery, patience has nothing to do with the outcome. Neither does worrying. Fear is difficult to subdue under these circumstances. The longer the wait, the more…

Carrying Hope from One Decade to the Next

Over the past decade, my son and our family have been through an intense journey from pulmonary hypertension (PH) to transplant. Most of the big, scary, sad, joyful, and incredible moments were squeezed into the past 10 years. Cullen was two years into his diagnosis when the world ushered in…

Allow Yourself to Feel Peace, Not Panic This Christmas

When I was a child, I wrote in a journal that my favorite part about Christmas was the feeling it created. It’s not just the joy of holiday lights and carols, the peace and awe of midnight Mass, the anticipation and excitement of presents, or the contentment that lingers throughout…

The Healing Power of Laughter

  It is said that laughter is the best medicine. My son’s battle with pulmonary hypertension (PH) and post-transplant struggles made me a believer. However, the humor behind the laughter has often been gross, silly, a bit dark, and sometimes a little off-color. I remember the first time Cullen fell…

Sharing Hope and Expressing Gratitude for Our PHamily

As Pulmonary Hypertension Awareness Month draws to a close, the complexities of this disease have been exemplified by the sharing of personal battles. Our community has cried out in memory of those who have died to raise awareness of pulmonary hypertension (PH) as a life-threatening condition. We have explained…

Living Life Focused on Quality, Not Quantity

Parents sometimes view birthdays, milestones, and even achievements as bittersweet. Witnessing a child mature and grow brings joy, but sentimentality tends to mix with the happiness. Many a parent has wished life would slow down so that they could enjoy the childhood of their offspring just a little longer. I…

Effortless Ways to Spread PH Awareness This November

November is Pulmonary Hypertension Awareness Month. I remember the first November of my son’s diagnosis. My family and I were still in the process of learning about this disease. Awareness to us was explaining to friends and loved ones that my son had a life-threatening, incurable condition. Exposing this…

Finding Closure in the Gross Lab

Happy Halloween! This week, I’m taking you on a journey to a “gross lab.” Yes, that is what it’s called. Four weeks after our son Cullen’s heart and double-lung transplant, we paid our respects to his old organs. Some might consider that morbid, but to us, it was…


A Conversation With Rare Disease Advocates