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.

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…

The Old Memories of Flying With PH Still Linger

My son had just been diagnosed with severe pulmonary arterial hypertension (PH), and he had a wish — and it involved flying. “I would like to meet George W. Bush, the president of the United States,” said then 8-year-old Cullen, to the surprise of the Make-A-Wish…

To Cry or Not to Cry, That Is the Question

Being a caregiver for a child with pulmonary hypertension (PH) can wreak havoc on one’s emotions on any given day. But during the holiday season, the heartache and stress can make even the strongest person teeter on the edge of an emotional collapse. It…

I Don’t Know What You’re Going Through, but I Do Care

“I know what you’re going through.” For someone who is physically or emotionally hurting, these words often fall short in providing comfort. Although our experiences might be similar, how we get through them may be very different due to many factors, such as personality, values, religion, family, friends, age, economic…

When You’re Both a PH Patient and a Caregiver

Since my son, Cullen, was diagnosed with pulmonary hypertension (PH) in 2008, I’ve had the pleasure of getting to know many people in the PH community. One thing I’ve seen that a patient and a caregiver have in common is how willing each is to extend emotional support…

Celebrating 50 Years of Good Times and Bad

Have you ever met someone and instantly felt like you’ve known them forever? I’ve experienced a rather twisted version of this. In a previous column, I described pulmonary hypertension (PH) as a toxic person rather than a disease. PH had such an immediate impact on my family that by…

What Do Caregivers and Succulents Have in Common?

I appreciate the camaraderie among caregivers that I have experienced. We find understanding, support, and comfort from one another, no matter what illness we are dealing with or the age of our patients. Caregiving can be an emotional, challenging, and rewarding responsibility, and that reality alone is what unites us.

‘I Apologize Too Much! Sorry for That’

I think people in the pulmonary hypertension (PH) community tend to apologize too much. We are so good at it, and we often say we are sorry when it isn’t necessary or even appropriate. It’s a topic we have fumbled with often in the Pulmonary Hypertension News Forums. A…