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…
Last week, one of my morning devotionals left me in deep thought for most of the day. It was about apologizing for everything that makes you the one-of-a-kind person you are. With both hands held high, I admit I’m guilty. Are you guilty of this, too? I’m sorry I missed…
Being a caregiver for a child with pulmonary hypertension (PH) can wreak havoc on one’s emotions on any given day. But during the holiday season, the heartache and stress can make even the strongest person teeter on the edge of an emotional collapse. It…
It was 2 a.m., and I was waiting to have my nose packed for a bleed that had been going on for hours, a result of blood thinners and oxygen that I used to experience from time to time. I remember hoping to get back to my college…
Something unexpected happened while scheduling my next quarterly checkup: I was told my lung specialist is leaving and will no longer be part of my care team for pulmonary hypertension (PH). This caught me a bit off guard. I had gotten to know this particular doctor over the last 20…
“I know what you’re going through.” For someone who is physically or emotionally hurting, these words often fall short in providing comfort. Although our experiences might be similar, how we get through them may be very different due to many factors, such as personality, values, religion, family, friends, age, economic…
A certain responsibility comes with being diagnosed with a rare disease. Because we know the details of our illnesses best, it is up to us to educate the world about them, so that greater knowledge and investment can be brought to our communities. This leaves me wondering what story I…
“Don’t be afraid to give up the good to go for the great.” — John D. Rockefeller Recently, my husband, Manny, and I made a big life decision by selling our home in Texas and relocating to San Diego. This was always our dream, but we never thought it…
It is strange to be diagnosed with a disability as an adult. I’ve lived with pulmonary hypertension for over four years now. In some ways, it feels like a lifetime — I feel like I can hardly remember pre-PH me — but I have really struggled to get used…
I’m grabbing the megaphone to raise awareness and advocate for pulmonary hypertension (PH). And I invite you to join me. Through advocacy, we’re able to make changes in the United States’ democratic system of governance. I believe change begins with the advocates and the storytellers who share their lived experience…
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