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PHighting for Rare Disease Awareness on Feb. 28

“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…

Three Ways Transplant Enriches My Life

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…

Tired of Always Being Tired

“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.

Marking Time After Transplant

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)…


A Conversation With Rare Disease Advocates