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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…

Slowly, you begin to ascend. At first, you can’t even see the apex of your destination, so already you’re feeling anxious. As the climb steepens, you feel ambivalent, wanting to brave it out but also wondering if it’s too late to get off this ride. At the top, your stomach…

It’s the season of giving, and I’m thinking an awful lot about the precious gift of time. During a recent interview on the “Today” show to discuss his departure from hosting “The Daily Show,” comedian Trevor Noah said, “Time is the one thing we cannot increase … so…

“Intimacy doesn’t have all that much to do with backseats of cars. Real intimacy is brushing your teeth together.” ― author and screenwriter Gabrielle Zevin Feelings of intimacy can help us feel more connected to the people we love. Intimacy is a decision. It’s often a risk, too, because…

“And if the oral antibiotic doesn’t work, they did mention they might want to do an IV antibiotic with a PICC line. But we’ll cross that bridge when we come to it.” My mom reluctantly tacked this onto the end of our discussion. She had been summarizing a conversation…

Selecting a coloring book wasn’t something I rushed as a child. Testing my parents’ patience, I would carefully page through many books until I found the perfect one with the most appealing pictures. I intended to color every drawing in the book, so selecting the right one was important, and…

During a recent drive up a mountainous road to the small, quaint town of Julian, California, I suddenly felt the telltale signs of altitude sickness hit me. The first was a bad headache. We continued driving, though, because my husband, Manny, and I both thought that Julian — which…