Do you use supplemental oxygen or know someone who does? We all need oxygen to breathe and to function. But most people breathe without giving it much thought. Yet some in the chronic illness and disability communities need a little extra help to ensure that oxygen flows throughout their…
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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.
In my childhood home, we didn’t have a coat closet. Or, to be more specific, we did have a coat closet, but the space was overtaken by a higher priority. Instead of holding winter jackets, it was packed full of medical supplies. A tower of mismatched storage bins and cardboard…
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…
I never finished reading Ron Chernow’s biography of Alexander Hamilton. Maybe you’ve read it. Perhaps you’ve seen Lin-Manuel Miranda’s musical based on the book, or heard the music. I’d be surprised to learn, however, if the book was in your hospital discharge bag, as it was in mine after…
Every few months, a viral video circulates. It features a father who has a chance to listen to his son’s heart, now living in a stranger’s chest. Or a daughter who valiantly offers a kidney to her ailing father. Or maybe the story of a long-term transplant survivor who is…
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…
For the past few months, I’ve been fighting a body that feels like it’s knocking me down. In addition to my chronic hypoxia and pulmonary hypertension (PH), my gastrointestinal (GI) system has continued to lose function. I’ve needed an increased amount of oxygen and have been more dependent…
​​”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…
Thirty-eight thousand, seven hundred, and ten feet. That’s the length of about 107.5 football fields, including their end zones. It’s also a ballpark estimate of the distance I’ve walked during six-minute walk tests since I was diagnosed with pulmonary hypertension (PH) in 2016. What a journey! A six-minute walk…
In the wake of a recent hospitalization, my life has quickly become dominated by new medications and treatment regimens. In addition to my physical recovery, which includes a focus on eating, hydration, and movement, I’m now filling the rest of my time with additional therapies, including vest and nebulizer…
A recent article by Pulmonary Hypertension News reports on a questionnaire-based study in the U.K. indicating that anxiety and depression are likely linked to less self-compassion by pulmonary hypertension (PH) patients and their caregivers. Studies have also shown that depression and anxiety are alarmingly high…
