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CF Update

Posted Oct 15 2009 10:04pm
This post is going to be pretty long and boring! But, this blog is a great place for me to document all of my CF related stuff for future reference, so here we go!

I've been to my wonderful CF clinic a lot lately, with three visits in the past three weeks and another planned for next week. Why, you ask? Well, my body always takes a beating this time of year. My lung function has gone from 85% to 68% to 72% to 64%. Oddly enough, my lungs are actually really clear! We don't know if my allergies are just totally out of whack or what (allergy test won't be back for a week or two), but this illness is definitely wrecking havoc on my sinuses. I'm clearing my throat, coughing, sniffling and sneezing every 2 seconds, which is probably driving everyone around me totally crazy! But, I'm fighting with all that I've got to keep it OUT of my lungs! I keep reminding myself that I was in the 60's this time last year and I bounced back to 85%, so that is definitely helping me keep the faith! Regardless, I am SO grateful for my 64%!

The good news -
- All of my labs from last week came back normal. Seeing all of my vitamin levels within the normal range made me very happy, since pretty much everything was low this time last year. I've become a vitamin junkie!
- No CFRD, although I am still borderline based on my blood glucose test I had done today (my results were pretty much the exact same as last year). My A1c from last week came back totally normal, so we're just going to keep an eye out for symptoms of diabetes and then do another test next year.
- My chest xray from today was clear and looked identical to my xray from this time last year. No change is good!
- I'm getting an eFlow!!! I cannot even begin to explain how excited I am about this!
- I'm done with the year long Tiger 2 clinical trial and I'm now in the extended study, where I am guaranteed to have the Denufosol and not a placebo. Based on my first 2 Denufosol treatments, I'm pretty sure I was on the placebo for the past year.

The bad news-
- My lung function. Being down 20% sucks.
- The fact that I'm borderline CFRD is obviously bad news too. I'd rather not have to deal with that!
- 2 weeks of oral Cipro hasn't put a dent in this illness, which is a bummer. Cipro is usually my miracle drug.

Here is my current CF care plan:

Pulmonary:
Xopenex - 2 puffs 3x per day, before Denufosol
VEST - 2-3x per day, 30 minutes per treatment
Pulmozyme - 2x per day, during my VEST treatments
TOBI - 2x per day every other month for 28 days
Denufosol - 3x per day
Azithromycin - 500 mg on MWF

Sinus:
Afrin - 2 squirts per day, as needed, but not to continue for more than 3 days at a time.
Sinus Rinse - 2x per day
Nasonex - 2 squirts 2x per day
Allegra - 1 per day

Nutrition:
Pancrease MT20 enzymes - 2 with meals, 1 with snacks
Vitamax- 2 per day
Vitamin B complex - 1 per day
Vitamin D3 - 800 IU per day
Vitamin E - 200 mg per day
Omega 3 fatty acids - 1000 mg per day
Calcium supplement - 600 mg per day
Women's One A Day Multivitamin (to provide water soluble vitamins)

Temporary:
Levofloxicin - 750 mg 1x per day for 14 days
Septra DS - 2x per day for 14 days
Prednisone - 60 mg 1x per day for 7 days
TOBI Sinus Wash - 1ml of TOBI mixed into sinus rinse 2x per day for 2-4 weeks (Has anyone else ever done this?? It's new to me!)

For all of you non-Cfers, here's a video if me doing my Pulmonary Function Tests (PFTs) that I always talk about. This was last week when I blew 72% and I sound so wheezy, which isn't the norm for me. I think most CFer's sit down when they do their PFTs, but I prefer to stand up and "dance". :)

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