Advice About Advice: Sort the Good from the Bad
Advice is like a bag of Halloween candy. You take it home, dump it out on the table, and sort through it. One pile for the good stuff, another to cherry-pick, and one for what you know you will…
Life as a Caregiver — Colleen Steele
Colleen Steele 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.
Featured Post
Good grief, it’s time to return to raising PH awareness
It’s been a while. Do you remember me? I fell silent in June 2023 after sharing a column titled “How I am coping since my husband passed away.” I’m an only child to aging parents, Mom, 86, and…
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Make-A-Wish Foundation Provides Joy to Children, Families, and Volunteers
In last week’s column, I shared how the Make-A-Wish Foundation granted my son Cullen’s prodigious wish to meet President George W. Bush in 2008. To be on the receiving end of this amazing nonprofit organization is extraordinary. The…
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,…
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…
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…
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,…
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…
How to Advocate for Your PH Child’s Education
Pulmonary hypertension (PH) has a ripple effect on family life. A diagnosis is like a pebble tossed into water, its weight disrupting the calm with waves of change. My advice is to wade through those ripples and rescue…
Celebrating 5 Years of Living After Heart and Double-Lung Transplant
My son is celebrating a big transplant anniversary! Five years ago, on Aug. 7, 2014, he received a heart and double-lung transplant. This very rare surgery was completed within seven hours, and from what I was told, he…
The ‘Healthy’ Sibling’s Struggles with PH
The siblings of medically frail children grow up fast because they witness harsh realities at an early age. They experience emergencies, hospital stays, medical equipment, and scary treatments, and have no choice but to comply with a long list…
How PH Changed Me, from Being More Compassionate to Managing PTSD
When my son was diagnosed with pulmonary hypertension (PH), I noticed a change in how people interacted with me. They hesitated before sharing personal problems, and if they did share, they would often apologize: “I shouldn’t complain because…
My Son’s Transplant Fundraiser Helped to Build a Community
Two positives came out of my son’s pulmonary hypertension (PH) diagnosis: It strengthened my belief in the power of prayer and rekindled my faith in people. My family has personally witnessed the kindness and generosity of both family and…
