I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.
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My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
All my life, I thought I was clumsy. It turns out that I had a neurological condition, bilateral vestibular loss, that was in all likelihood caused by antibiotic use.
I went through my first surgery recently. I want to share what I learned during my recovery.
I've found an airway clearance routine that works for me by relying on knowledge of my body and breath control, combining conventional airway clearance with yoga breathing techniques.
When our daughter was diagnosed with cystic fibrosis, all I could think about was walking into that first CF clinic appointment and walking out with “the vest.” Although transitioning to the vest was the change I feared the most, it's been a welcome change to our once-difficult routine.
For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.