The hard part I’ve heard that waiting for the transplant is the hardest part. Every day after my transplant, I heard, “This is the hardest part,” leaving me a firm believer in relativism and forever poised for future “hardest parts.” When I went on the heart-lung transplant list,…
It’s the feeling of dizziness. It’s the fatigue that seems to come out of nowhere, the inability to concentrate on the mindless TV show in front of me and the headache the pulses through me that alerts me that my oxygen levels are low.
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…
I didn’t know what pulmonary hypertension was before my diagnosis. When I would tell friends and family about the disease, almost all of them learned about it for the first time through those conversations. As I began adjusting to life with PH, vigorously searching for stories of other people facing…
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 my alarm goes off at 9 a.m. in the clinic and I pull out my bright green pill organizer, others around me start to do the same. “I’m glad she did that because it reminded me,” I hear one woman say as I leave the…
Preparing for a new school year looks a lot like countless trips to Target, staying up all hours of the night going through Pinterest ideas, creating laminated posters, developing different behavioral plans, creating a positive behavior program for all students, looking at the upcoming…
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…
Greetings! If you’re reading this post you most likely are: Living with pulmonary hypertension; have a loved one, family member or friend who is fighting this rare disease; a healthcare provider; or have joined the fight to find a cure in some advocacy or research capacity. Whoever you are…
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…
“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…
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…
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