I had a great tip to Knoxville and Eastern Tennessee Children’s Hospital over the weekend. I love learning from CF families all over the country.
One thing I learned from the CF Family Day at ETCH is that the stigma around g-tubes still exists. The g-tube is a visual indication of illness, being different and medical needs. I get it. I struggled in the weeks following my g-tube surgery, but was able to get past it for a number of different reasons. I realize that I’m probably in the minority when it comes to having a relatively easy transition through dealing with the “new toy” compared to some other people. I was probably in the exact right part of my life to have it placed – between my overall maturity, medical need and understanding of cystic fibrosis. Not everyone has the luxury of perfect timing for such a lifestyle change. I was so incredibly happy to get this kind of feedback from the families at my talk. We’ve worked quite hard over the past five or six years to help erase that stigma – to the point where I actually worked for a major enteral feeding company to work on ways of connecting with patients. I just want to say… I hear you and we will continue to work on it!
Something I Wish I Would Have Known as a Kid
One of the questions I got at the CF Family Day was to something to the effect of, “What do you wish your parents had done differently when you were little as it relates to your CF care?”
I wish I would have known what every single medication’s purpose was when I was a kid. Sure, I knew that I had to do my albuterol, hypertonic saline, Pulmozyme and Tobi with a little chest PT mixed in. But I didn’t know why and what each med was doing inside my body. I’m not saying I wish my parents would have taught microbiology classes when I was little, rather I think it would have been an excellent motivator to know why I was doing all these things. It would have been nice to know that I was opening up my airways, hydrating my lung to trigger coughs, thinning out the mucus with Pulmozyme and then killing the bacteria hiding inside my goopies. Parents, don’t underestimate you kids! Encourage them to take an active roll in his or her care, and most importantly make sure YOU learn why your kids are taking these medications.
Team Boomer Athlete of the Year
I always LOVE meeting different CF families at Education Days, and I met so many at ETCH, but I also finally got the chance to Avery Flatford’s parents. Avery was Team Boomer’s female athlete of the year last year. I was happy to hear how well she is doing and how much she did for CF awareness in Knoxville last year!
Going to a big time college football game has long been a bucket list item for me… Sadly, BC doesn’t quite qualify as a big time college football team. So, I made the most of my trip to Tennessee and went to the UT-UF game on Saturday. Here we are sporting our Volunteer Orange.
…and that’s what I’m thinking about this morning!