Have you ever wondered why some people openly share their health struggles while others keep them to themselves? Before jumping to conclusions and assuming it’s all about seeking attention, let’s take a moment to reflect. Speaking up about my chronic illness journey with pulmonary hypertension (PH) has given…
Worth the PHight - a Column by Jen Cueva
It’s 7 p.m. on a Thursday, and my husband, Manny, and I are cooking dinner. Suddenly, my phone rings. Manny looks concerned and says, “It’s the nephrologist.” I already have a gut feeling it won’t be good news. My bloodwork has been all over the place the past few…
Over the past few months, I’ve asked myself several times if I’ve become a better or worse friend, but I didn’t know the answer. When pulmonary hypertension (PH) makes me feel my worst, I worry I’m a bad friend. I can’t spend as much time with people as I’d…
Picture yourself sitting in a waiting room at the doctor’s office, playing the waiting game. You’ve all been there, of course. How do you determine how long is too long to wait? Your answers, unsurprisingly, may vary. In an informal survey, I asked 15 people with pulmonary hypertension (PH)…
Pulmonary hypertension (PH) manifests and affects us each differently, adding to the complexity and mystery of the disease. Let’s continue to support each other, even as we acknowledge that our journeys are unique. In doing so, we can bring awareness and relief to others with PH. No matter where…
Do you find yourself constantly apologizing for being sick? Do you also neglect to share on social media your feel-good days or your progress to avoid upsetting others in the pulmonary hypertension (PH) community? Take a moment to track how often you hold back this way over a week.
Managing life with pulmonary hypertension (PH) and other illnesses can be overwhelming. Juggling appointments, procedures, pharmacy visits, and insurance calls leaves little time to focus on feeling well. Chronic pain, PH symptoms, and medication side effects can also affect my quality of life. Since I was…
Throughout my 18-year journey with pulmonary hypertension (PH), I’ve unfortunately had many experiences where doctors have brushed off my symptoms. I was once admitted to an intensive care unit where healthcare providers dismissed my hyponatremia, or low sodium levels, assuming it was simply a side effect…
All people encounter daily concerns and stresses that affect their mental well-being. Although commonplace stressors are inevitable, they can become overwhelming and lead to emotional upheaval when not managed well. The pulmonary hypertension (PH) community faces these everyday worries, plus the added stress that a rare disease brings.
Cooking has always been an enjoyable pastime for me. I believe the satisfaction of nourishing others stems from my Southern heritage. My late grandmother, Mawmaw, as we called her, passed down her buttermilk biscuit recipe to me. Reflecting on this evokes a craving for one, reminding me of the joy…
The spacious wooden table, covered with vibrant sprinkles and pieces of sugar cookies, holds cherished memories of years ago. Our three daughters were gathered around it, the youngest seated in her high chair, all filled with excitement while making cookies and decorating Easter eggs. These festive moments were customary with…
​​”She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” — lawyer and cancer patient Elizabeth Edwards, from her memoir “Resilience: Reflections on the Burdens and Gifts of Facing Life’s Adversities” Almost three years later, I still haven’t recovered to…
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- New study links SOX17 mutations to severe PAH in children, some adults
