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.

Walking the Transplant Tightrope for a Second Chance at Life

A pulmonary arterial hypertension (PAH) diagnosis can have a significant impact on someone’s life. Without treatment, a PAH patient’s health can rapidly decline and leave them facing a difficult future. Some may be eligible for organ transplant and are placed on a waiting list with enough time to actually…

There Is Still Hope for a Failing Heart

Up until age 6, my son Cullen was a healthy little boy. Earaches, wellness checks, and immunizations were the only reasons I took him to the pediatrician. So I was shocked when he began complaining that his heart felt funny and he was short of breath while exercising. Asthma was…

The Day the Music Lived

The emotions of an 11-year-old girl named Riley take on a life of their own in the 2015 Pixar movie “Inside Out.” In the animated film, the control center of Riley’s brain is headquarters for five emotions portrayed as the characters Joy, Fear, Anger, Disgust, and Sadness. They control…

California Couple Shares Their PHenomenal Love Story

A woman driving home from work becomes severely short of breath and dizzy. She pulls over into a “No Parking” area, which draws the attention of a parking enforcement officer. He calls for help, and she is rushed to the hospital. Five days and many tests later, doctors diagnose the…

PH and Periwinkle Go Together Perfectly

Pulmonary hypertension (PH) might look and sound like asthma, croup, chronic obstructive pulmonary disease, or a panic attack — but it’s not. It’s a rare, incurable, and life-threatening condition. The color of the PH awareness ribbon might look purple, lavender, violet, or blue — but it’s not. It’s a delicate…

Tips to Get Over the PH Diagnosis Hump

I enjoy hot peppermint mochas year-round. Going through the Starbucks drive-thru is my favorite daily routine and the only line I don’t mind waiting in. I use it as an opportunity to relax, pray, listen to music, scroll through my phone, read, or gaze out the window. The…

A Struggle With PH and Comorbidities

Living with pulmonary hypertension (PH) requires a great deal of self-awareness and analysis to distinguish between PH symptoms and treatment side effects. This effort becomes even more challenging when comorbidities come into play. Roger Bliss, a Pulmonary Hypertension News forums member, provides an example of such challenges. He…

Indulging in Some Complementary Therapy

Did you know that since 1995, we have designated Feb. 6 as “Pay a Compliment Day” in the U.S.? Adrienne Koopersmith was inspired to create it when the bus she was on picked up someone who was nowhere near a stop but in obvious need of a ride. Koopersmith…

Pets Can Help Care for the Caregivers

Three of my family members are very high maintenance. They rely on me for just about everything, and whine if I don’t help them right away. They constantly do things that distract me from my responsibilities and have no sense of personal space. Ours might sound like a toxic relationship,…

A PH Sibling’s Journey From Childhood to Adulthood

Parents of children with pulmonary hypertension (PH) commonly express concern about the emotional and developmental effects on their healthy offspring. They worry about how their healthy children deal with feelings of sadness and fear. They stress over sibling rivalry triggered by feelings of unequal parental attention. And they’re…