In 19 years of living with pulmonary hypertension (PH), the period of greatest illness I experienced was during my sophomore year in college. It was the only time in college that I was unable to live independently on campus and had to commute from my parents’ home nearby. About four…
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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,…
I was hospitalized following my heart-lung transplant in 2018 One of the biggest emotional burdens was experiencing the passage of time, which was most notably marked by the holidays. Halloween was first, quickly rolling into Thanksgiving, and then Christmas. These were all difficult days spent with my immediate…
As another year comes to an end, I reflect on memories from 2021. Since my pulmonary hypertension (PH) diagnosis, I desire reflection more each year. Those of us with rare diseases often get caught up in the mundane moments of being a patient. Whether this means taking handfuls of medications…
Like many people, I have always treasured the holidays. The weeks between Thanksgiving and New Year’s feel like a time for joy, community, and celebration. The holidays can also be stressful, but they can be especially devastating for those of us managing a chronic illness. I can remember the years…
“Seeing is believing, but sometimes the most real things in the world are the things we can’t see.” ― Chris Van Allsburg, “The Polar Express” When I was young, my parents worked diligently to create a sense of wonder during the holidays. My sisters and I participated in church,…
It turns out that National Cat Herders Day is an occasion people celebrate. Observed on Dec. 15, it’s a day to recognize people who achieve the impossible as part of their jobs or positions, and do work that requires incredible feats of willpower and organization, and a…
For the first few years after I was diagnosed with pulmonary hypertension (PH) in 2017, I always felt an ongoing battle between the desire to go out and have fun and the need to look after myself. I was constantly walking the line between pushing myself just enough and…
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…
The tightness creeps up in my lungs just as I’m about to make up the bed with a second clean sheet. I pause to catch my breath and wonder how unfolding a piece of fabric can make me feel like I just sprinted up a flight of stairs.
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…
