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.”
I decided that I wanted to live on the Caribbean island that I grew up on. Although it takes some planning and work, I'm thriving there.
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.
After three surgeries to fix a collapsed lung, I still managed to travel abroad. It took a lot of planning, help from family and friends, and simply not caring about what other people think.
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.
If you have cystic fibrosis, don't waste your strength on the travel leg of your vacation. Save your energy for the fun stuff by asking for help when you need it.
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.