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“Mom? My heart rate is really slow.” I remember this moment clearly. In a time of poor health due to my pulmonary hypertension, there was a day when my heart, which was typically pounding, slowed to a quiet crawl. We were scheduled for a routine checkup the…

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…

When the doctor used the phrase “your deformity,” I immediately braced myself for the remainder of the appointment. I compartmentalized the comment for the moment and would deal with how I felt about it at a later date. I’d raised the possibility of my getting a lung transplant, which…

Dear Future Self, I know you’ve been experiencing days that feel like years. Living with a body that feels out of control and a mind that must react isn’t easy. The combination of depression, anxiety, and physical pain is exhausting. I know that right now, you may…

I take note of my slight breathlessness and increased heart rate as I dab some blush on my cheeks. I inhale a few deep breaths before standing up to put on my dress. I sit again to put on my shoes and then check the time. After another few deep…

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…

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…

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…