As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
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I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”
As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.
Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy.
When I started coughing up blood, letting my care team know helped me handle it the next time.
For months, I was too scared to tell anyone that my new inhaled antibiotic wasn't working for me. But after opening up about it with my CF care team, I learned that being honest is the most important thing I can do when it comes to maintaining my daily care.
A lot is said during clinic visits. Here's just a few examples of what we've heard that show the range of relationships people with CF have with members of their CF care teams.
The transition from my pediatric care team to my adult care team was a bit bumpy, but, as we got to know each other, our relationship has grown strong.
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.
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.