Life as a Caregiver - a Column by Colleen Steele

Following years of slow decline due to pulmonary hypertension (PH), by 2014, my son Cullen was in critical health, and our hopes were fading. Thankfully, a heart and double-lung transplant saved Cullen from the imminent expiration date PH had placed on him. A few months later,…

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…

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 quote the famous holiday song, “It’s beginning to look a lot like Christmas, everywhere you go” — including at the hospital.  Over the years, there were many times I feared my son Cullen would spend his holidays in the hospital because of a…

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 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…

I’ve been writing, posting to social media, and talking about my son Cullen’s pulmonary hypertension (PH) journey since his diagnosis in 2008. When a heart and double-lung transplant saved him from the disease, I continued to share his story to increase awareness about PH.

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…

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…

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 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…

Parents sometimes joke that they wish their child came with an instruction manual. If there were a manual for kids, I would’ve had to toss out my son Cullen’s manual when he was 8. That was the year he was diagnosed with pulmonary hypertension (PH). The PH diagnosis made…