Living with cystic fibrosis can be challenging to say the least. Communicating with our care teams is crucial to managing our disease, and so we share a lot of important moments with them.
Following are some responses the Foundation received from their survey “Stuff Care Teams Say,” in which they asked the CF community to share some of the more memorable things their care teams said to them. The responses reflect the connection between us and our care teams on a human level.
- “My doc was telling me that his [primary care physician] was aggravated with him for refusing to take a certain cholesterol test every year (he takes cholesterol meds) because his insurance doesn't cover it, yet they want that particular test done. I told him he was non-compliant. We laughed and he segued into me refusing a well visit for insurance reasons. Crafty. LOL.”
- “Is this infection north or south of the border?”
- “Let's start this course of antibiotics and see how the labs look.”
- “In college my care team was not excited about me participating in enjoying 21+ drinks. But they said if I was going to enjoy those drinks that I should at least eat fatty foods as my body would absorb more fat for me to get my weight up. Therefore, I was at least doing something kind to my body!”
- “Are you still running? (Yes.) I really believe that's the best thing for your lungs. Never stop running.”
- “I had a doc that would begin his answers to my questions with, 'Well, people with CF...' Finally, I said, 'Please don't answer me in the third-person. I am people with CF.' He smiled and said 'noted.'”
- “My doctor always mentions current and upcoming studies and asks me if I'm interested in being involved in any that I may qualify for. He explains the drug(s) and the study and we talk through which ones may be a good fit for me. I love that my care team brings clinical studies to my attention so I can directly impact the improvement of CF care.”
- “My brother and sister also have CF, but all three of us are currently at different CF centers. My doctor always asks how they are doing, which means a lot to me. I think the CF community, care teams included, are very compassionate that way.”
- “We will do what is necessary to help you live better.”
- “What are your concerns?”
- “My son with CF and I were in for a quarterly appointment after a culture came up positive for an infection, despite the fact that there was no sign of illness. After completing an aggressive course of antibiotics, all I could think about as we sat waiting for the new culture results was a possible hospital admission and how we were going to rearrange our lives for it. My son had a ski trip with his friends coming up that he told me he was so afraid of missing out on. When the results came back with good news, my son began to express his relief, to which our doctor replied, 'Me too.' To us, those words conveyed the feeling that we were partners who ultimately want the same thing -- good news and good health.”
Ultimately, our care teams can be extensions of our family. Whether they are saying things resembling nagging, worried parents; indulgent grandparents; bratty, annoying siblings; or the distant cousins you see once a year, the stuff they say in those moments impacts our CF lives. What makes the stuff our care teams have said so memorable is how it made us feel about ourselves, our disease, and our care.
