When it comes to my cystic fibrosis care, some might say that my situation is a bit unique. Although having not one -- but two -- CF care teams can be challenging, I strongly believe that has made me a better, smarter, and more engaged patient.
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I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.
As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
Many people with cystic fibrosis experience hemoptysis. Although that can be serious and is often frightening, most often it's not as serious as you might think. Let me set the record straight.
Although packing up and moving to college is not easy for anyone, it becomes more complicated for a person living with cystic fibrosis. Not only do we have to adjust to the unfamiliar ways of college life and be entirely in charge of our health, but the group of people we trust with our life changes as well.
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.
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.