PH can impose physical restrictions, but don’t limit yourself
It's easy to become overly focused on what we can't do
It’s a beautiful day in the country for what appears to be the beginning of autumn. There are acres of trees, mostly green except for a few that have changed to gold. They’re casting a shadow over a lake, but on the other side sun is glistening on the water and the land is covered in lush, green grass. It appears to be a wide-open field except for the ruins of an old fence. All that remains is a small gate held up by two standing pillars. Peering longingly through the wrought-iron bars are three clueless sheep.
This picture (photographer unknown) of sheep confined by an imaginary fence has been making the rounds on social media. People are sharing it with their personal view of its symbolism.
When I look at the picture I think of the pulmonary hypertension (PH) community and how physical restrictions caused by the disease can lead to life-altering mental fatigue in both patients and caregivers. We can become so focused on what we can’t do that our minds neglect to seek ways of living past the gates that PH puts up.
Take that first step
Prior to his heart and double-lung transplant 10 years ago, my son Cullen, 25, lived within the confines of PH. When he was diagnosed in 2008, it seemed the more his dad and I learned about this rare, life-threatening condition, the less we could envision Cullen living any sort of a normal life outside the safety of our home.
Thanks to an excellent PH specialist, compassionate staff, and the experiences shared by other PH families, we became aware that it was as important for Cullen to explore what he could do as it was for him to stop when faced with something he couldn’t.
Cullen was placed on triple therapy, and one of those PH treatments was continuous intravenous Flolan (epoprostenol GM). It required a central venous catheter placed into a large vein leading to his heart, which would emerge from a small opening in Cullen’s chest.
He spent weeks in the hospital as his body adjusted to this metaphorical new appendage while his parents learned how to care for it and prepare the medicine going into it. When he was released to return home, that first step back into the real world was intimidating.
We were facing the beginning of the school year and were frozen with worry about allowing Cullen to attend. But we pressed on by meeting with his principal and teachers to educate them about PH, develop a plan of how to keep him safe at school, and explain that some days he might not be well enough to attend. Our efforts were successful and, years later, he graduated from the eighth grade with his class.
Due to his Flolan treatment and the pump needed to administer it, bathing was a challenge and swimming was a no-go — until we gifted Cullen with a dry suit. That was yet another gate opened back up for him.
Some days Cullen found himself on the shady side of life and on others, the sunny, but no matter which side he was on, we did our best to keep him free to wander and experience what he could.
My advice to the newly diagnosed and their caregivers is to seek friendship and understanding from the PH community, but don’t limit yourself to them. We spread PH awareness so that those affected by the disease can go out into the world and live in it to the best of their ability. We are always here for you, but we will never hold you back from enjoying a life of quality. I invite you to join the PH News Forums where we share our experiences, both PH-related and not.
The fourth sheep
The sun sets on New Year’s Eve 2024. (Photo by Colleen Steele)
In the picture of the restrained sheep, there is a fourth one, standing next to the gate, vision unobstructed by the bars but still frozen in place. As a caregiver, I can relate to that sheep. I’m not physically limited in moving forward, but I often feel unable to because of my caregiving responsibilities.
On New Year’s Eve, the setting sun reminded me of how unnecessarily tethered I have become to helping others. I was out running errands and allowed myself quick glimpses at the sky. Its beauty encouraged me to pull over into a nearby park and enjoy watching the sun go down.
Taking that moment to step away from my responsibilities and enjoy a few moments of peace was so refreshing that I’ve made it a part of my daily routine in 2025.
Sometimes all it takes is a setting sun to herd us in a more inviting direction.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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