Because so much rides on them, the pulmonary function tests (PFT) -- that are a part of every cystic fibrosis care center visit -- fill me with anxiety.
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Although I am very involved in my son's cystic fibrosis care, I have learned to rely on the insight and expertise of his care team when mine isn't enough.
Here's how being open and honest about all my symptoms, cystic fibrosis-related or not, with my health care providers has improved my overall health care.
As a mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.
When it comes to my cystic fibrosis care team, I've learned that it's often the little moments that matter most.
Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.
When I started coughing up blood, letting my care team know helped me handle it the next time.
Community feedback highlights the importance of CF care teams, in-person CF care, and telehealth.