I’m a positive guy, I swear it. But I’m exhausted and need a good vent. *** When I pay about $100 per week for prescription medicine, I feel punished for having a genetic defect. I loathe that my body actively tries to murder itself against the…
You’ve somehow found someone to walk through the life that is a cystic fibrosis life without scaring them off. Great! Now, how the heck do you go about planning a wedding that is fun, special, and undamaging to your health? This is a dilemma that I dealt with…
A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings. The many aspects of routine CF care — preparing medications for the week, reconstituting antibiotics, Vest treatments, sterilizing nebulizers, IV antibiotic administration,…
BreatheCon is a free online conference hosted by the Cystic Fibrosis Foundation (CFF) for CF patients 18 or older from across the globe to share life experiences, ideas, and encouragement. I have attended this incredible annual event since its inception in 2016. It has been uplifting to…
Friends. Today, my message is simple. Your quality of life matters. Quality of life is integral to physical health Inevitably, you will face trials that require quality of life sacrifices for survival. “Sacrifice” is a carefully chosen word, in the way one might sacrifice a legion to win…
The passionate outpouring following Claire Wineland’s devastating passing last week has exemplified the influence she had on her friends and family, the cystic fibrosis community, and the millions of strangers she inspired. She was incredibly loved and admired — that was so very apparent. I’m sure you can agree…
Winter 2016-17: Sabrina Santos We called each other twins. Sabrina, like me, was a nerdy, faithful, coffee-loving journalist. She also had cystic fibrosis, Mycobacterium abscessus, deafness, and an urgent need for lung transplantation. Unlike me, she was fearless. Sabrina wielded titanic power. Her radiant eyes could shatter…
“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence in a Facebook update when we learned that no options remained for her chronic rejection after a second lung transplant.
“Ahhh, so lucky! Enjoy your vacation.” Many people thought hospitalizations were times to sit around and cruise the internet; get treated like royalty and served wine. (Nah, I only got rubbing alcohol.) The response was rarely, “I hope you feel better,” or, “Let me know if I can…
This weekend, my son, wearing a tiny crown and old man suspenders, blew out the candle on his birthday cake. It was beyond adorable and tugged at my mama-heart in the saddest way. The blown-out candles marked the end of my first year as a parent. As I’ve written before,…
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