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“You just have to be patient.” I can’t begin to count how many times I’ve heard this throughout my years of managing chronic illness. Although I have 26 years of experience with doctor’s appointments, testing, surgeries, medications, and the many joys that…

I’ve written before about the importance of community while battling chronic illness, especially rare diseases. The advice and support I’ve received from other patients through online groups and in-person PH conferences have been invaluable to my…

Thinking back to my most recent hospital admission makes me realize just how important it is to know my warning signs. With pulmonary hypertension and chronic illness, we are no stranger to emergency room visits and overnight…

“It’s about the journey, not the destination,” is an oft-quoted phrase that is meant to remind us to be in the present and savor the special moments along the way, instead of being preoccupied with that next destination. This saying takes me back to my high school English…

Receiving a transplant is more than the gift of life; it’s the gift of a rich life. Living with a transplant is not easy. Though I have fully functioning lungs, they are quite stressful to maintain. My transplant was the single most transformative event in my…

“Why am I so tired?” I ask myself at 10 in the morning, just a few short hours after waking up. I wish that I could say this was due to lack of sleep the night before, or from overexerting myself in the early hours of the morning.

It didn’t get old. I was still very much amused the third time I deposited a stack of postcards emblazoned with an illustration of the heart pulled from my chest seven months prior. Last February, I mailed 75 graphic Valentine’s Day cards to friends…

Think back to what it was like riding a carousel when you were young. I’m sure you raced for the best horse, and you wanted to be the first one buckled. When the carousel started, it may have been moving more slowly…

Days We counted time in days after my surgery. The first few were a blur. “How many days was I asleep?” I wondered. I was lucky. Thursday night, I went into the operating room. Friday night, I got off the ventilator. (Courtesy of Kathleen Sheffer)…

Brad and I met because he commented on my blog, wherefore I visited his blog and read this piece in which he laments not connecting with a deaf classmate before he lost his own hearing.

“I’m fine.” Even though I know it’s a lie, sometimes it’s easiest for me to give this response when people ask, “How are you?” Why am I so accustomed to saying this even when I feel far from it? The reality is…

The paper crinkled beneath me as I sat on the edge of the exam room table while waiting for my pulmonary doctor. I was at the hospital for my quarterly appointment to do a few tests and check my health status. I felt…