one day at a time . . .

So I went to the dr yesterday, my PFTs are up 2 more % – 44%. My right upper lobes are still junky. Depending on how I feel in 5 days – we may stretch the IVs to 5 weeks.  My breathing isn’t baseline, I’m still winded. My prednisone is down to 7.5 mgs – this is when it gets scary – my breathing trouble always worsend when I’m ready to stop the prednisone. SO for now, I’m staying on 7.5mgs.

So, 4 weeks of IV, maybe 5. This is a first in 20 years! I can’t help but to wonder what changes are going on with my CF. I mean, 3 weeks and I still have a junky cough! So when I finally stop, will the bacteria begin to  multiply again? Am I on a downward path?

I hate that there are no answers. This is one of the worst parts of CF – the not knowing what tomorrow will bring. I’ve always come through my IVs and done well for 3-6 months. I haven’t had a good month since the summer of 2008.

I just want a ‘breather’… a ‘break’… 3 months would be nice. 3 months not to be constantly fighting. 3 months where I can live a semi normal life. Get back on a normal CF routine.

So I’ll push through it like I always do, with a smile on my face and fear in my heart.

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Comments on: "IVs – Day 24ish – 4/16" (6)

  1. I hope that you feel better soon and get those 3 months or more of feeling well.

  2. That’s scary, for sure. I’ve never been on longer than 3 weeks, so I can only imagine your anxiety about what is going on. I’ve read about anabolic bacteria that can go undetected because of how deep it’s buried and should just get on antibiotics for that type “just to see” – maybe that is something the docs are willing to try.

    Get well soon.

    • Thanks!

      yes – she put me on the flagyl just before I started the IVs – then it was clear I needed to start the IVs – so then I had to stop the flagyl. Maybe we’ll try it again in the future.

      Also, I need to restart the aztreonam nebs. I stopped them about a year ago – I thought it was contributing to my problems. Once I’m done with the IVs – I’ll restart them and see how I do. What’s interesting is, according to my sputum culture, I’m not sensitive to aztreonam – but the dr said the cultures are based on the IV dosage of the drug – and the inhaled dosage is 14 times stronger!

  3. What’s the flagyl for? C-Diff prevention? There’s a great probiotic that might help, too, called BIO-K. Not cheap though.

  4. its for the possible anabolic bacteria. What’s C-Diff?

  5. It’s a bacteria that attacks the stomach and intestines that is nasty. Flagyl is a drug used to treat it. Good thing you don’t have to worry about it.

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