Mom and I had flown to Denver to meet a specialist and strategize treatment for my nontuberculous mycobacterium. Part of the clinic visit concerned treating my barren appetite and nonstop nausea. We’d tried nearly every anti-nausea prescription by then, and…
Victorious — Brad Dell
Brad Dell is Deaf and was diagnosed with cystic fibrosis at 2 months old in 1993. He received a double-lung transplant from UC San Francisco in January 2017, then cochlear implants nine months later. He lives in Hawaii, where he was raised. Usually he’s traveling the world, chugging coffee, or devouring books. He also pastors Restoration Community Church and serves as the director of community content at Bionews, this site’s publisher.
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As a child I was a kicker, the type no nurse wants to be near when wielding needles and throat swabs. Eventually I’d relax my shrieking when Mom or Dad held my hand and called me brave. The nurses were then more warmly received. To be safe, they came bearing…
Ba-doop. A notification pops up. It’s an old friend: “Hey, Brad. How are you? It’s been so inspiring following your journey!” “Aw! I’ve been doing great, thanks.” Abruptly: “So, I know of a fantastic product…
The gastroenterologist (GI doctor) shut the clinic door and towered over me, strong, bronzed, and healthy. He checked my chart and saw I had lost 3 pounds. He abruptly barked at me about my “lack of effort” in gaining weight. He yelled that it’s as simple as forcing…
With CF, there are fights to live taking place in the hospital. And then there are fights to live taking place in the streets and in political offices. Germs will always be out to kill us — we’ve got to accept that. But do we need to accept…
Jan. 14, 2017 was the worst day of anxiety I’d had in the five months of waiting for my lung transplant. A frantic, nearly palpable tension was in the air. After five confident months believing the “light at the end of the tunnel” was rebirth, rather than…
“I can give something to relax you,” the doctor says. I stiffly nod, neck taut and arm outstretched for an arterial blood gas test. The doctor holds up a syringe — a drop of shiny liquid is squished between needle and plunger. It’s the purest looking substance…
The world isn’t fair. Anyone born with a genetic disease like cystic fibrosis before they’ve even had a chance to earn bad karma knows that. But that doesn’t mean we need to stand aside and “take it” when other people are unfair to us…
A couple weeks ago, I wrote about misunderstandings within the CF community. But what about misunderstandings projected into the community from the outside? If you’re a non-CFer, keep these things in mind when interacting with someone who has the disease. You might not feel sick, but that…
“You’re so lucky.” I’ve heard and read that all too often over the past year. I’m lucky I lived to my 20s with cystic fibrosis, I’m lucky I had a lung transplant, I’m lucky my recovery was relatively smooth. The phrase is…
“Cystic fibrosis is a genetic lung disease.” That’s an accurate statement, sure. But it doesn’t reflect the diversity of patient cases — the myriad mutations that cause each case of CF, and the unique medical contexts that shape those cases. And, as all CFers know, the mutations affect…
I’ve gone through life afraid of numbers. Not just math, although I’m really terrible at that. Numbers like “37”: the life expectancy of someone with CF, a number that was even lower when I was growing up. Numbers like “4”: the amount of antibiotics needed to…
I walk through a football stadium. I catch a whiff of the cotton candy and am smacked back to every procedure I’ve had, breathing in the stale cotton candy-scented anesthetic before I drift to nothingness. I am so overcome with fear that I feel like dropping to…
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