one day at a time . . .

I know I haven’t posted in like forever… It’s been a rough several months…

In 2010 I was on IV meds for 101 days.

So far, for 2011, here’s what’s gone on:

  • 26 days: 3/11 thru 4/4 – on tobra, merrem, and midway added ceftaz (aso had my sinus surgery on 3/30)
  • 19 days: 6/22 thru 7/10 – on tobra and merrem
  • 19 days: 9/7 thru 9/25 – on tobra, merrem and levafloxicin – had to lower the merram dosage due to major headaches – took lots of percocet to combat the headache pain

So, that’s 64 days so far, and here we go again… My last day of IV was 9/25, and one week later I started with shortness of breath as well as thrush. This was my first time with thrush – I guess it was just so much antibiotics in such a short time.

My PFTs just aren’t doing what I’d like them to do. My 47%/48% baseline is a distant memory, and now it seems to be at 41%/42% – although right now it’s 36%, as I am not well.

Before I start IVs yet again, we are trying inhaled TOBI to see if that helps. I started that today. I’ve been on oral cipro/bactrim since 10/9.

I have to say I am extremely tired of being short of breath. It takes over my life. I can’t even exercise!

Here’s an updated view of my PFT history. As you can see, it’s on a slow decline.

So I’ve been a bit nervous about my CF future. Hoping to reach a good baseline for another 20 years!

Oh, and have I mentioned I haven’t been able to successfully wean off of prednisone since October 2008!

Well, that’s it in a nutshell…

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