The Joys of having CF

The Joys of having CF

Tuesday, September 16, 2014

10 days...

Where has the time gone...the last time I blogged was May?!?! I guess time has gotten away from me. There's quite a bit to catch you all up on, so here goes.  Since May not to much has happened. I was staying busy this summer, and also staying "cool" since we had kind of a humid summer. I stayed in AC most of the time :) Then August came upon us...
In August I had my annual 3 month check up, and if you remember my post back in May(See Here), you know things weren't going great but they certainly weren't bad. Well fast forward to PFT's are currently down 9% in lung function. Which to some may not sound bad but in a CFer's life its not that great. I've gone from being a consistent 96-98% lung function down to 91%, yeah, you could say I'm not happy. Yes I understand warmer/humid weather does affect PFT's and will make them lower, but that is a significant drop. So my doctor still doesn't think anything is wrong, he says lets wait it out. Well I am not concerned even more so because I see my numbers slipping, and I know someone with lower PFT's than mine will probably say: "you're functions are good", but am not proud of my numbers. Now about a week ago my lungs started to feel even more tight than they have the last few months(and I have expressed my doctor with my concern and he says lets wait it off a little). So they put me on 3 cipro pills and 2 bactrum pills twice a day. That's a total of 5 antibiotics even before all my others. Well I took my night time dose, then morning, and I DID take with food. Well all those pills caused some kind of reaction with my stomach, I became hot/cold, dizzy/lightheaded, upset stomach. I.Was.Done! I literally crawled in bed and slept for 30 hours. finally after all that I started feeling somewhat better, and all I had eaten was chicken soup. then they decided to call in Levaquin(my Miracle drug). it does the trick ever.time. well at this point and am not willing to try any.more pills.
So I decide to do my research and get a second opinion. I found someone local who actually does deal with CF patients(that's a first for the area I live in), so I had an appointment today. I gave her my last PFT's. she wasn't to happy with them. She totally understood my frustration, and we discussed a game plan. I have 10 days...10 days on 750mg of Levaquin, 1 pill once a day for 10 days. If I don't feel any better by 10 days when I go back to see her, we will be doing a chest X-Ray and a admission....if anyone has remembered I haven't been in the hospital in over 2 years...for some reason oral levaquin doesn't always work, but IV always does the trick, we aren't sure why, she said it could be because CFers have a harder time breaking things down in their system and with IV it's more direct, and with that it's now down to 10 days...
Soooo that's where things are at lately. Kind of a long update. I apologize. I will try to not take so long with updating next time. I will try to post and let you all know the decision after my appointment next week.

I hope everyone's doing well and enjoying this Fall like weather we've been having.

~God Bless

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