Author Archives: Colleen Steele

My Son Shares Words of Wisdom on His 7-year Transplant Anniversary

“The surgery went well, with no complications, and the new heart and lungs are functioning beautifully.” Aug. 7 marks the seven-year anniversary of posting that miraculous update to my son Cullen’s CaringBridge journal. Living without pulmonary hypertension (PH) has undoubtedly changed his life for the better, but Cullen, 21,…

Turning the Tables on Caregiving

I will turn 50 in October, and I have ignored worsening symptoms alerting me to a possible health concern for many years. I finally decided it was time to face what I was avoiding and schedule a doctor-recommended upper GI endoscopy and colonoscopy. As the anesthesiologist was preparing…

Love Can Make a Broken Heart Feel Strong

I have read that the heart is the hardest working muscle. If you’ve ever seen an echocardiogram of a heart laboring against pulmonary hypertension (PH), you’ll agree. But anyone who doesn’t give the heart credit for being the strongest muscle has never met a grieving mother. In an email…

From PH Mom to Registered Nurse: A Story of Love and Determination

Nurses are remarkable people. My respect for them has grown significantly throughout my son’s pulmonary hypertension (PH) and transplant journey. Their job requires important skills, intelligence, patience, persuasiveness, compassion, energy, emotional control, a strong stomach — the list is endless. And I can’t think of a more suitable person to…

Treating PH Like the Bully It Is

Since my son Cullen’s diagnosis in 2008, I have imagined pulmonary hypertension (PH) as a toxic person rather than a disease. Like the Grim Reaper, PH is an intimidating figure that wears a hood covering its face with looming darkness. The image never reacts or responds, but provides…

Pets and PH: Furry Friends Are PHamily, Too

It doesn’t take long after a pulmonary hypertension (PH) diagnosis to realize the disease will have an influence on the patient, family members, and yes, even the pets. Our furry friends who snuggle with us when we are tired, comfort us when we are feeling down, and appear concerned or…

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…