Just A Number

"Adapt or die. As many times as we've heard it, the lesson doesn't get easier. The problem is we're human. We want more than just to survive. We want love. We want success. We want to be the best that we can be. So, we fight like hell to get those things." ~Grey's Anatomy

When did life become a number game? Age is just a number, weight is just a number, and my pulmonary function test results were just a number today. I've never been that great with math, but in my life where numbers are so important, I put a lot of chips on the number game hoping for the best luck.

Today, was a regular check up day with my CF doctor, Dr. Light. I laid in bed the night before after hours and hours of doing chest physiotherapy and breathing treatments, wondering about my appointment and how it was going to play out. I knew that I had to do a PFT(pulmonary function test) to see the progress of my disease and I've gotten to a point in my life where just thinking about the test makes me a little shaky in the knees. My disease is progressing and I'm aware of the situation. When I go to the doctors, I feel like I am under a microscope as I talk about my medications, health regimen, and daily obstacles with Cystic Fibrosis. By the time I'm done with seeing the nurse, the psychologist, the nutritionist, and doctor plus a resident to examine me, I'm exhausted. At this point, I just want someone to come in and say your perfect, but I know even if I put on make-up and dress up, I still can't hide the fact that my organs are failing on me. My PFT results were 46% FEV1, they had dropped. As I stared down at the results on paper, I couldn't hold back the emotion I was feeling, even though I was telling myself it's okay, it's okay. I allowed myself to release knowing I needed that moment to cry. At that moment my smile was stolen. Why is the number so low? Why can't it be better?

The doctors, Dr. Avacelis and Dr. Light, who were both in the room said, that a number is just a number and it's more important how I feel. So numbers aside, I don't feel super great health wise, but I don't feel crappy enough that it is hospital time either. I just feel like I'm coasting. I feel that people adapt, adaptation is a part of life. Living with Cystic Fibrosis, my body has learned to adapt. I have learned to keep going and keep pushing, regardless of my low lung function. From what I have read and learned throughout the years from reading blogs and talking with other people with Cystic Fibrosis is that even a person going through transplant or chronic rejection after transplant will have the will to adapt, keep on going til there is no more sand in the hourglass, and on the outside you wouldn't even know how hard the person is truly working. It's how the body is made. I explained to the doctors that I'm keeping up with my breathing treatments, chest physiotherapy, I take all my oral medications, and inhalers, my CF digestive issues are good(I eat like a cow), and I have my workout buddy, Aiden(my fuzzy son), who is my outdoor trainer. I'm doing everything that is expected of me. Doctors orders are to keep on doing what I'm doing and increase the exercise. Also, they want to run a glucose tolerance test again to see if I have Cystic Fibrosis related diabetes(CFRD) which is common in Cystic Fibrosis. There was one tweak in my regimen and that is to not do Colistin via nebulizer anymore because that antibiotic does not seem to prevent infection as well as it used to in the past. I will be going back to using Tobramyciin via nebulizer twice a day on my months off of Cayston. We either adapt, fight, or flee.