By definition, a champion is someone who dedicates themselves to promoting a cause or idea. I serve as a Partnerships for Sustaining Daily Care (PSDC) champion with the Cystic Fibrosis Foundation, and we are on a mission to help strengthen the partnerships between people with cystic fibrosis, their families, and their care teams.
As a 37-year-old with CF, I've spent an awful lot of time with my own CF care team, making many observations and taking mental notes along the way. And if there's one thing I've learned, it's that the little moments often have the greatest impact.
Case in point: A few years ago, I was in the hospital and had been having a hard time getting back to my baseline. My respiratory decline had been so gradual, I hadn't even realized how shallow and strenuous my breathing had become. One afternoon, my amazing nurse practitioner came into my hospital room to see how I was doing. When I expressed my frustration, she put her hand on my shoulder and said, “A few times a day -- whenever you think of it -- stop and take five really deep breaths.”
It was something so simple and obvious; it didn't cost one penny, and yet it made such a remarkable difference. I look back on that moment with abundant gratitude, as one simple moment that's helped me countless times. I still use that advice to this day.
After gathering stories from other adults with CF, their families, and care teams through the PSDC initiative, here are a few more examples of small moments that had a big impact when it comes to CF care:
“My 2-year-old son with CF really struggles to gain weight, which has been extremely overwhelming due to the positive correlation between weight and lung function. Walking into our most recent clinic appointment, our doctor made my day when he pointed to my son's stroller and said, 'You push him around in this thing now, and he'll be around to push you in your wheelchair.' It made me smile in a moment where all I wanted to do was cry. -- Mother of a child with CF
“I had a young adolescent man as a patient who had a lot of digestive troubles. His mother was very bothered by his gas (which was exacerbated by him not taking enzymes with snacks), but he thought it was hilarious and was not a concern to him at all. We weren't getting anywhere trying to push him toward my or his mom's goals of taking his enzymes, but we knew that he was concerned with gaining more muscle as a lot of young teenagers are. So, I simply explained how taking enzymes can help him significantly improve his protein absorption when he eats his snacks, which, in turn, helps him build muscle. This came to be something that he really valued and changed his mind about how he takes enzymes with his snacks. Sometimes, what we think is important isn't important to the person.” -- CF dietitian
"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, what our new 'normal' might be if the infection takes hold, if this was the start of his decline, and everything I knew my son was so afraid to miss 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." -- Mother of a teenager with CF
If there is one common thread connecting these moments, it's basic human-to-human connection. Despite the challenges we all face, when health care professionals and their patients can pause long enough to really connect, a single moment can hold more power than you think.
At the end of the day, human beings are driven by emotion, and health care is no different. What we feel often outlasts what we think, so it's the little things that make a big difference.
If you have a little moment or story you'd like to share about sustaining daily CF care, email the PSDC team at PSDCteam@cff.org to be part of this movement.
