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Ever-Improving CFers on the Rise

CelebrateIt’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.

I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!

It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.

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Pulmozyme: The Effectiveness of One Medication

This is a zebra

Pretend this is a donkey, then Fatboy.

We’ve all done it at one point or another in our lives, usually in college or right when we move out of the nest: stop taking one or more meds. It does seem pretty ridiculous to be on so many things at times, and you feel fine taking everything, so what’s going to happen if you stop one? Just one. Well, I’d be glad to tell you what happens so you don’t have to be a bonehead like Fatboy. I know I’m going to hear about this from my coordinator, but I can take it. I just want to be sure you don’t do the same thing or do the same thing with your kid with CF. Consider this a PSA.

A little over two weeks ago, I ran out of Pulmozyme and I was trying to get a 90-day supply in order to save on co-pays. After unsuccessful attempts at that and a coordinator vacation, I finally got my hands on a new order this week. So I admit it: I was non-compliant for 2 weeks because I was too lazy to call the pharmacy for a follow-up so they would call the doctor’s office to get the re-fill.

What happened in those two weeks with just one medicine not being in my arsenal? I feel more asthmatic. My cough increased, but it certainly isn’t a productive cough, so it’s not like I suffered with an infection or overgrowth of anything, but my quality of life did actually go down. [Read more…]