Physical, emotional, and mental exhaustion are common symptoms of pulmonary hypertension (PH) and caregiver burnout. Many of us will keep packing on the fatigue until that snowball gets harder and harder to push. All too often, we’ll stop only when the weight of it rolls back and crushes…
In the spring of 1999, at the age of 3, I developed a hoarse voice. My mother thought that maybe I had a cold, so she brought me to my pediatrician for a checkup, expecting a prescription for antibiotics at most. This was the first of many misunderstandings about my…
Most people are good. I truly believe we’re better than what we ingest daily from the local, national, or world news. But what often keeps us from proving it is a lack of inspiration and information. Allow me to offer you a bit of both. Today is Valentine’s Day, also…
I love breakfast burritos. When I lived in California, it wasn’t uncommon for me to go on breakfast burrito runs with co-workers or while hanging out with friends over the weekend. I don’t know what it is about this magical food — maybe it’s the hot sauce — but there’s…
Life with pulmonary hypertension (PH) is overwhelming and exhausting at times. We patients often find ourselves sitting in doctors’ offices, calling about insurance claims, and checking on medication refills. This can be difficult when conversations seem almost always centered on treatments, test results, and the latest PH research.
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…
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