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.
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When I first got an enteral feeding tube as a teenager, I had no idea how many doors it would open for both my health and my involvement with the cystic fibrosis community. Fifteen years later, here's how I'm doing today.
Burkholderia cepacia took a toll on me physically, but overcoming the emotional blow was even more difficult.
Managing your blood sugar if you have cystic fibrosis-related diabetes is difficult, but the glycemic index can help.
From scheduling appointments to dealing with insurance, taking charge of your own care is a part of becoming an adult with cystic fibrosis. However, when the time came for me to take over these responsibilities, I realized more could be done to make the transition smoother.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
You can best manage your health when you know what to expect, what resources you can use, and a community of people with whom you can share your experiences.
As someone who is in the hospital three to four times a year, I've found that there are a few things I need to create a comfortable environment. I love to look online and see what other people with CF bring to the hospital, so hopefully, my list will give you a few ideas for your next stay.
Your doctor may classify your baby as having CRMS/CFSPID if he or she has a positive newborn screen and subsequent sweat chloride test results that fall into an uncertain or borderline range described as "intermediate."
When I started coughing up blood, letting my care team know helped me handle it the next time.