Wednesday, February 10, 2016

New Game Plan?

I went into today's clinic appointment full of anxiety and apprehension. I felt this way for multiple reasons. The biggest was the fact that I have had multiple trips to Vandy that didn't show desirable results. My lung function has been on the decline despite all of my efforts with breathing treatments and trips to the gym. Honestly, I was beginning to believe that I had reached the limit of my lungs and that I would only lose lung function in the future. It has truly been just as much an emotional struggle as it was a physical struggle to keep all of the hard work up. I just kept telling myself that even if I wasn't seeing what I was hoping for, I was feeling pretty good.

On top of that, I have been dealing with some pretty random and very painful joint pains. They hit a joint for a day or two making my trainer have to rethink my workouts to avoid the effected area. It has been frustrating to say the least. It has affected my ability to push myself in my workouts which could definitely have a negative effect on my lung function.

The cherry on top of my worries was the weather. Temperatures in Tennessee have been on quite a roller coaster. We saw highs in the 50's and 60's last week and then had a 30 degree drop this week. When there is a drop like that, my lungs seem to close up. They become tight, and it makes it much more difficult to breathe.

So that brings us to today. I went in expecting my lung function to be the same or lower than last time, but I was in for a surprise. I did my PFT three times like usual. My third time was my highest, and while it definitely was not the highest I have ever had, it was higher than October's. I went from 42% on October 21 to 44% today! I am ecstatic! To add to that, I also gained a few pounds which always puts a smile on my doctors' faces. The only negative from the visit is that I still don't have any answers about the joint pain.

What's the game plan now? In the words of Dory, "Just keep swimming! Just keep swimming!" I'm going to keep pushing through and taking things one day at a time. I'm on day 771 of being compliant with my treatments, and I'm working out with my trainer four to five times a week. Fingers crossed that I keep seeing an upward trend, but if not, at least I'm feeling good and enjoying my life!


  1. I get joint pain too from time to time. No real answers from doctors, but taking daily doses of Vit D3 makes it stay away! It was crippling but now I have none. Maybe it will help you too! Fight on Cyster.

    1. Thank you! I will definitely look into that!

  2. Hi Kayla!

    We have been doing a documentary about CF following the journey of a CF patient as he gets listed for a trasnplant. I'll share the trailer here, maybe it can help some people get hope and look at it trough a different angle. I hope it inspires you and the people reading this blog :) Nick is always available and happy to help others who suffer from CF and to talk about his transplant experience. Hope you like it. Lots of luck to you.