Imagine being asked “How was the Superbowl?”, hard to do right? Now imagine you get to go for free… I imagine the next thoughts are “Oh my goodness! I can’t even imagine! No freaking way!” Well before January 2019 that would have been my thoughts exactly. Thanks to an incredible story and an amazing experience, I can answer that question and so much more.
I started calling the hospital #ClubRainbow because we use to kick it in there. So many fun memories, which I realize might sound weird, but between the camaraderie, the staff, it was a long, extended, all-be-it, unwanted vacation. We made the best of it, as at the end of the day we were a family.
I decided I wanted to keep this post light & share some of the moments that made Club Rainbow what it was while giving that authentic “Only Nick” feel.
“The Call” in the CF world that’s what we refer to as that moment when a person who has been awaiting a transplant officially has lungs ready for them. I know many people who have gotten “the call” & it’s such a rush of emotions. It’s a situation where you never forget what you were doing when it happens
Pulmonary Function Test (PFT) is a big part of CF Life.
When people ask “what are your numbers” This is what they mean. This test FEV1 – simply put how fast & hard a person can inhale & exhale air in 1-second. This number can greatly vary among CFers. Generally speaking the lower this number is the less lung capacity a person is working with, and thus the more difficult it is to breathe. However, make no mistake this is only one tool among many. In some cases, it is not a true indicator of health which is the case in my situation.