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.

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…

My Son Dreamed Big, and Make-A-Wish Made it Happen

In 2008, my 8-year-old son was diagnosed with pulmonary hypertension (PH). Being told that Cullen had an incurable, life-threatening illness was traumatic. It was impossible to imagine that there would be happy days following that news. That year, two wish granters from the Make-A-Wish Foundation visited Cullen at home.

How to Keep PH From Ruining Halloween Fun

My inner child awakens every fall. As the foliage starts to change into its glorious colors, I go to work decorating my home. And while sipping pumpkin spice latte, I think about what costume I will wear to this year’s party. On Halloween, you will find me on my porch,…

Tips on Organizing PH Supplies at Home

Change is inevitable when you or a loved one is diagnosed with pulmonary hypertension (PH). There will be physical, emotional, and social adjustments. And one day you will notice that your home has been unexpectedly redecorated. Boxes of medical supplies will take over tables, drawers, and cabinets. Trash cans…

My Son’s Friendship Was Not Defined by PH

My son Cullen was excited to tell me he’d made a friend on his first day of kindergarten. Fifteen years later, he and Keenan remain best friends. Cullen’s battle with pulmonary hypertension (PH) might have challenged their friendship, but it never came close to impacting their bond. Cullen was…

The Therapeutic Benefits of Owning a Pet

My son was 8 years old when he was diagnosed with pulmonary hypertension (PH). Children are supposed to be nurtured, but the attention showered on a child living with a life-threatening disease can begin to feel smothering. For the five years my son battled PH, I greeted him each…