On Sunday, one of my longest friends with pulmonary hypertension received a heart-lung transplant. I met Camille at the first PH Conference I attended in 2000. I was 6 and she was 10, so it was a big deal that she even talked to me, let alone befriended…
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For most of my life, “being brave” meant that I had to be tough. For me, this looked like hiding my true feelings with a smile, fighting tears when experiencing pain, learning to just live with the physical feelings I was experiencing, and complaining only when…
“At least you don’t look sick.” I’ve heard this comment before — meant as a compliment, I’m sure. As if saying “you don’t look sick” is a good thing. As if it makes up for feeling like I got hit over the head…
My sister and I fell asleep in our flannel nightgowns as my mom drove our minivan the 14 winding miles home. Dad was on a work trip, and we’d spent a full day enjoying the treasures of our adoptive grandmother Verna’s home. Not wanting to disturb…
“You shouldn’t be sitting around all day. If you don’t get up and do something, people will think you’re just lazy.” “You shouldn’t use your illness as an excuse to rest and take a break.” “Why can’t you get the…
When asked to help launch the Pulmonary Hypertension News Forums, I was honored, excited … and I felt like a fraud. “I don’t even have PH, anymore!” I reasoned. Surgeons wiped a 16-year-old diagnosis from my record…
“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.
