Columns

Last week, I was discharged from the hospital four days after surgery. During my stay, my body had gone through a trauma. I was operated on, intubated, and mechanically ventilated. I was managing pain that felt beyond my control. I was sleep-deprived, medicated, and not in…

Claire Wineland’s death on Sept. 2 set the tone for the month. Great losses in my communities clouded September. Claire suffered a stroke after a double-lung transplant. She was a brilliant young woman with a gift for public speaking, and she had cystic fibrosis. Her story was highly…

Wednesday’s evening air was heavy. It was as if Atlas kneeled and tugged the sky down with him. I drove through the California hills and beaches of Santa Cruz for hours, searching for anything that could relieve my inexplicable despair. While driving, I remembered the month before, when I sat…

Are you a Grover or a Bert? A Cookie Monster or a Kermit the Frog? You’re probably wondering what Muppets have to do with my journey living with PH. Stay with me. I recently discovered the Muppet Theory, thanks to a colleague who recently asked me if I…

“What is wrong with me? Why does this still hurt so much?” I asked myself this as tears flowed down my face while looking at a friend’s maternity photo shoot that popped up on social media. While staring at pictures of a perfect baby…

“Live in the moment.” This saying is such a cliché in the chronic illness realm, yet I force myself to reply with some version of this daily when I am asked how I’m doing. My response usually is something along the lines of,…

A large part of pulmonary hypertension management is taking the necessary medications to help ease symptoms and delay progression. Because pulmonary hypertension impacts more than just the lungs, many with this disease have a list of at least a dozen different medications to treat various…

I love the desert. No, this is not a timely column post about Burning Man. Sorry to disappoint. I’ve really only been to the desert twice. The general inconvenience of traveling with pulmonary hypertension (PH) limited me before, and my doctor advised me to avoid high…

“Auntie B, come catch me!” My nephew yelled this, already off to a quick head start. Luckily, my sister was there to chase after him and take my place. I started thinking about how badly I wish I could run after him and…

Attending the Transplant Games of America in Salt Lake City earlier this month was the best gift I’ve ever given myself. As discussed in previous posts, I have met many other recipients in hospital waiting rooms and support groups. It was a unique chance to…

Growing up with more than one genetic condition, I never gave much thought to the long-term effects they would have on my body. It wasn’t until I became an adult and started taking control of my health needs that I realized how these genetic conditions contributed…

*** “Pain comes in all forms. The small twinge, a bit of soreness, the random pain. The normal pains we live with every day. Then there’s the kind of pain you can’t ignore. A level of pain so great that it blocks…