The last time I was in the Hole for a tune-up was in May. I left after a 25 or so day stay blowing a 73% (with a "baseline" of 75%), but feeling ready to get back to kicking booty. I then had a follow-up appointment about a month later where I blew a 75%. It was at this appointment I set up another clinic visit for roughly 6 months out, on January 6th. I made it my mental goal of trying to stay out of the hospital until then, which would have been a record length of time in-between stays.
Shortly thereafter, I started on an unnamed clinical trial for my specific gene mutation, DDF508.
Since getting out of the Hole in May, I have felt great! My workouts have gone very, very well and I definitely felt more energy throughout the day than I normally do. My mucus seemed very "watery" and I was able to expel it somewhat easily. My breaths were deep and I was moving large amounts of air with each one that I took.
I had very few bumps in the road since getting out in May. A cold here or a sore throat there, but they would last for a day or two at most. I was feeling very good about my January 6th goal.
Things started to change about two weeks before Thanksgiving. I started to slow down. I wasn't feeling bad, just not quite as good as I had before. Still, I was firing at about 90%. I think the biggest factor that led to this slow decline was an injury to my foot. There were days that I wasn't able to put weight on my foot, and therefore, was not able to complete my usual workouts. Not being able to complete my normal workouts is what probably opened the door for CF to outwork me.
You see, I'm convinced that my CF works at the same level, let's just call it level 75, all of the time. It's up to me to work at a level 76 or higher every single day if I want to stay ahead of it. There's no doubt that not being able to complete, or even attempt my workouts, brought me under the 75 level. I know that sounds overly simplified, but you know what, it works for me, so...
Anyway, after a couple of weeks of working below my regular level (mind you that my treatment time didn't decrease, but actually increased in trying to "make-up" for lack of exercise time), I started to feel "off". My coughing increased. My mucus got thicker. My sleep felt interrupted. My energy level decreased. You know, the same old song and dance. I would have 1 good day for every 2 sub-par days. During this time, Mandi and Mckenna were both battling a stomach flu type of thing, so part of me was hoping that my decline was due to fighting their sickness off. If that was the case, I thought, I may be able to make it until January.
That was not the case.
After about 10 days of a slow decline with increased symptoms, I waived the white flag and called in the cavalry. When I finally made it into clinic, I blew a 63%. Not terrible, but not where I need to be. And more important than the number, I wasn't firing on all cylinders and we were all convinced that without intervention, we would continue to watch a slow decline, or quite possibly, a fast one. So, after over 6 months out of the joint, I got booked back in (which by the way, is a longer parole than normal).
It's been 8 full days of antibiotics. After 7 full days, I blew a 69%. I'll take it. It isn't uncommon for me to have no increase or even a slight decrease my first full week. More importantly, I'm feeling better than when I came in, and am looking forward to what this next week brings.
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