“What’s with the nail file?” my sister asked, her eyes failing to conceal her amusement. Still grinding my nails down, and with two backup emery boards in my purse, I explained my new habit, one of many recent changes she bore witness to. Nail files My nurses gave me a…
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Over the past several months the PH and rare disease community have seen significant progress towards ensuring that everyone with a condition can get access to the proper specialized care they require. This year alone, I’ve become increasingly more involved with disease advocacy; it mattered to me. With…
“Her face looks a little purple out on the ice. Should you let the coach know? Should she take a break from the game?” This is what was said as family members watched my hockey games when I was younger. My entire life,…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via…
The changes were gradual enough not to alarm me. I went from a steady 110 to 118 pounds in less than a year, but always celebrated weight gain. The blue coloring in my lips and fingernails was more pronounced, but I figured I was just paying more attention. Determined…
Think back to when you were a child in the school yard. There was always someone who never liked playing by the rules and ruined recess for everyone. The first time the rules weren’t followed, you may have stopped and tried to calmly explain…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…
This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…
When I tell someone I had a heart-lung transplant, I’m usually greeted with “congratulations,” unless they are particularly clueless and say, “Get well soon.” When I was dealing with intense postoperative pain and brain fog, it upset me to be congratulated on my “new life.” With multiple blood draws, tests,…
In the age of big-data large computational power, scientists are hovering over a wealth of information that can unearth the next generation of medical discoveries and therapies. When patients visit a doctor, their information is often stored as an electronic medical record. If the document is thorough,…
“How is your anxiety?” a doctor asked me in the ER. The sarcastic side of me would have loved to say, “I am handling being transported by ambulance from my pulmonary clinic with a 70% oxygen level and burning lungs pretty well. In fact,…
