My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.
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Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.
Cystic fibrosis kept me from thinking that I’d ever get married, but my improved health made my dream wedding possible. Three approaches helped me manage my CF while celebrating the happiest day of my life.
After I was told to stick with sprints because my cystic fibrosis would make it hard to become a distance runner, I was determined to prove that this disease won’t hold me back from my goals.
Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.