The years since my heart-lung transplant due to pulmonary hypertension have passed with fluctuating clarity. Some seasons have been rapid or insignificant, blurring one into another. Others remain in my mind, fixed in sharp definition — as if a part of me is still arrested in those moments.
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When the late afternoon rolls around and I’m ready to wind down, my body often has other plans. These moments seem to bring out the worst of my pain, and I find myself curled up in a fetal position on the couch. Yet, I’m hesitant to take pain medication…
It isn’t often that my husband, Tim, and I attend an appointment with his pulmonary arterial hypertension (PAH) physician and hear what we’d like. Many times the news is a gross reminder of the condition and how limiting it can be. A typical visit goes as follows: Check in,…
To the lady who glared at me and muttered under her breath as I pulled into a disabled parking spot: Why not approach me and ask me why I parked there? I’d gladly explain that I have pulmonary hypertension (PH), a rare and progressive disease that affects my heart…
Do you have trouble relaxing? That might seem like a silly question given that summer vacations are in full swing. But I’m asking because of my own ongoing quest to better relax as part of my treatment plan for pulmonary hypertension (PH). Long before my PH diagnosis…
One of the first things my parents were told when I received a pulmonary hypertension (PH) diagnosis at the age of 4 was that I wouldn’t be able to have children. My mom thought this was an absurd topic to bring up, given that the same doctors didn’t…
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…
“Every one of us gets through the tough times because somebody is there, standing in the gap to close it for us.” — Oprah Winfrey It has often struck me how fortunate my husband, Tim, and I have been that the same physician has cared for him for over 20 years.
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…
I’ve said it before, and I’ll say it again (and again): Elected leaders in the United States need to hear from their constituents, which include many of us in the pulmonary hypertension (PH) community. The doldrums of August is the perfect time to connect with your members…
When I was in elementary school, my mom had two hopes for my growth trajectory. She wanted me to be able to fit into a size 6 shoe, and she hoped I would reach 5 feet tall. I’m happy to report I surpassed both goals once my growth spurt hit…
Tim, my husband with pulmonary hypertension (PH), says on occasion, “It’d be nice to be normal sometimes.” He said that earlier this month, when we took a boat out for the July Fourth weekend. In North Carolina, where we live, July means one temperature: scorching. Relief comes in a…
