Author Archives: Colleen Steele

“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,…

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…

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…

I recently dreamed that I was walking toward a hospital room to visit my son, Cullen. A doctor stopped and told me that Cullen had died. I walked away in a state of shock, but then quickly returned in tears and begged for a chance to see him. When I…

Stress was familiar to me long before my son Cullen was diagnosed with pulmonary arterial hypertension (PAH). Bruce Springsteen sings about being “Born to Run,” but when you run, you might trip. I was born to worry about things like that and so much more. Not that I…

Throughout my son Cullen’s pulmonary hypertension and heart-lung transplant journey, it has been my impression that hospitals try to treat the whole person — body, mind, and spirit. Over the past 13 years, he has been treated at four hospitals in two states, and each facility has offered chaplaincy…

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…

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…

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…

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…

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…

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…