Friday, October 15, 2010

Well, they didn't admit me

But that's about the best news I got at clinic this week.

I'm feeling good, I really am. Unfortunately, my PFT's aren't reflecting that. In fact, I've lost all the lung function I gained with home IV treatment and my numbers are hovering right around where they were when I was admitted back in August.

I'm now walking the very fine line between doing okay and needing to be hospitalized. Heading into cold and flu season is going to make it that much harder to stay well, and if I slip up at all it's goodbye life, hello hospital for two weeks.


I'm more than a little frustrated by this, especially since I've been working my butt off - quite literally! I lost a few pounds after my tendon injury and surgery, then some more during my little surprise hospital stay, then even more during the two weeks of IV's that followed. I've been able to put most of that weight back on, but unfortunately my bum hasn't made a comeback quite yet.

There's now an APB on my rear end so if you happen to see it, please alert the proper authorities.

Apparently being totally compliant with my meds and upping my treatments to three times a day (the most I've ever been required to do) just isn't cutting it right now. Such is life... or, more accurately, such is CF life.

Fortunately, there are still A LOT of treatment options for me. I'm adding Cayston to the rotation, which means I'll be on inhaled antibiotics all the time now. Since I feel noticeably better during my TOBI months, both my doctor and I are optimistic that Cayston will make a difference for me. Also good news: my foot is feeling great (there were a few really rough days after the boot was removed, but things are getting better each day) so light exercise is a GO! I feel like a regular exercise routine is a HUGE part of what helped me bounce back from the worst exacerbation of my life, so I'm anxious to get moving around more.

Here's to hoping that (with continued dedication to treatments, the addition of Cayston and the gradual return to an exercise routine) my PFT's return to normal VERY SOON!

And that my bum quickly follows suit.

1 comment:

  1. Well, my dear lets get those lungs in shape!!! I am so glad you will be getting back to exercising!!! I will be praying that you will actually find the time to exercise and that your PFTs go up, beyond what you even expected!!


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