True love isn’t just found in fairy tales. Terese Tuohey met her Prince Charming, Timothy (Tim) Tuohey, at a dance. They fell in love, married, and will celebrate their 15th wedding anniversary in October. In an email interview, I asked if they view their marriage as rare. They agreed they…
As babies, our first steps were probably acknowledged with exaggerated praise. Since then, however, not every step forward has been applauded. Wouldn’t it feel awkward if they were? My son Cullen received a heart and double-lung transplant in 2014 after pulmonary hypertension (PH) caused a critical decline in…
Nothing makes me crankier than walking into the ER any time after 9 p.m. Lying on a stretcher that feels more like cardboard than a mattress, with fluorescent lights burning a headache into my temples, will have me missing my bed at home in an instant. It’s an experience I’ve…
Life with pulmonary hypertension (PH), a rare disease with no cure, is challenging. The helplessness is compounded by the fact that a solution may exist, but it’s currently out of reach. To get through these emotions, we who have PH rely on faith and hope to motivate…
I love dark chocolate: the complexity of the rich flavor, the bittersweet notes of cacao. Some say that dark chocolate is an acquired taste, not for everyone. As I write this column, I’m indulging in a square of hazelnut and coffee-flavored dark chocolate and thinking about memories. The chocolate was…
I take note of several things as I walk the familiar route through the three different hospital wards on my floor. Pushing an IV pole, my eyes scan my surroundings as Taylor Swift sings loudly in my oversized headphones — the universal alert that says, “Please don’t talk to me.”…
Goals give us direction. They put a powerful force into play on universal, conscious, and subconscious levels. However, those of us with chronic and rare diseases like pulmonary hypertension (PH) often push our bodies too hard. That’s why this year, I’m setting a goal to be more realistic. Almost…
When my son Cullen experienced a fast and critical decline in health after six years of battling pulmonary hypertension (PH), he received a heart and double-lung transplant. Recovery from the surgery was difficult, and the past eight years following transplant have brought various challenges. But Cullen’s dog, Mellow,…
The weekend after Thanksgiving, I had a gusher of a bloody nose and one thought: Winter is coming. When the seasons change, I get bloody noses. I feel them coming on like a dog sensing a forthcoming storm before we mere humans feel a drop of rain. During the worst…
It’s beginning to feel a lot like the day after Christmas. Hopefully, that feeling is joy, but if it isn’t, what’s bothering you? Were symptoms of pulmonary hypertension making you too ill to go anywhere or do anything? Did the holiday not go according to plan? Maybe…
Imagine you’re walking through an open field. It’s quiet except for the faint trickle of a nearby stream and a rumble that sounds like thunder in the distance. The thunder seems to get closer, and soon you realize it’s the sound of galloping hooves. Expecting to see wild horses run…
As we’re in the middle of the holiday season, many people are swiping their credit cards for the perfect gifts for their loved ones. What about those of us in the rare disease community already struggling to pay for medications and other treatments to improve quality of life or…
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