My Two Favorite Dorks

My Two Favorite Dorks

Thursday, August 12, 2010

50!!


the eFlow nebulizer - fancy!

I hit 50 today (fev1) at CF clinic.* Yay! I was at 50 or slightly higher two times last year, and before that it was a couple of years since I had been that high. The true coolness to it is that I am continuing to go down on my Prednisone, which has inflated my numbers the last few years. I'm currently at 3mg/day, if that means anything to you, and hoping to be off it entirely at some point in the near future.

Other news from clinic: I may be switching from Zenpep, my current digestive enzyme, which I have been on for only a month. Let's just say it is slowing me down and I'm not as happy with it as I was my old Pancrease. I am trying a third enzyme now, Creon, which offers free vitamins. I hate to switch so much, especially when the reason for the initial switch was a pause in manufacturing of my old brand while it was rebranded, but it will be worth it to find something I am happy with.

I had to turn in all of my stuff from the aztreonam (an inhaled antibiotic) extended access program that I was on. I was sad about that because I am in the middle of a 28-day cycle of this drug, which I need three times daily, and I only have three nebulizers to do it in (whereas I had built up to nine with my new ones from the company plus my old ones from expanded access) - which means that I have to wash nebs every single day! That truly, truly sucks. One of the worst things about CF in a day-to-day sense is washing nebulizers. It is such a pain in the rear!

I continued to sing the praises of NAC, a supplement I've been on seriously for several months now, but my doctor is not as excited as I am about it. He wants to see the research done to prove that I am not just a fluke. But how can I be a fluke? People with CF don't just improve with nothing. In fact, even with the addition of therapies, they often continue a slow decline. Not only have my numbers gone up, and I have not been sick (plus other benefits I won't mention here,) but my Prednisone, as I said before, has continued to go down with few side effects. I have always had tremendous problems coming off Prednisone and it wasn't until the NAC that I was able to do it so smoothly.

Even though my doctor is a skeptic, he said that UNC might be interested in a simple research study with respect to NAC and me ... they would want me to drink it (like I do now) or inhale it (like is usually done for other conditions that use it) and then test how much is actually getting into my lungs. Sounds pretty painless and definitely for a good cause.

What else...oh yeah, did I mention that my fev1 was 50%??? :) :) :) Kind of makes up for all the other crap I've been dealing with lately.

*For those of you who don't know what this means, 70 or higher would usually be considered "mild" or, for me, low maintenance/low symptom CF; 30, on the other hand, is usually when you start to think about transplant.

7 comments:

  1. yay! Are you drinking mucomyst or fizzy nac?

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  2. Actually, both Shannon! Works best for me to do PharmaNAC in the morning since my breakfast is usually carby; then I do the mucomyst at night along with about 4oz of apple juice. :)

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  3. this is awesome. you rock. congrats!!!

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  4. Wow Laura, what an awesome post! I've been so out of it still with all the blogs so this was a great way to jump back in. 50% -- congrats!

    You sounds very on top of everything too. Me = not so much lately and feel bad about it.

    I'm just starting Creon having switched from Ultrase. The verdict is still out for me. I hope it's going to work out.

    I'm wondering why you have so much experience with Prednisone? I don't think I've ever taken it before...why is that.

    Good to see your blog again. I think I'll make the rounds right now. :)

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  5. Congratulations on hitting 50! That is a great feeling, and nice to know that you have found the right combination of therapies for you. Good luck with the research at UNC, I definitely think it is a good thing. Thanks for doing this for all of us cystics. :-).

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  6. Kelly,

    I am trying Creon now, too, because I wasn't so thrilled with the Zenpep. They weren't awful, I just didn't love them like I did my old brand. So far, so good, what do you think?

    The reason I've had so much experience with Prednisone is that I have a really big asthmatic component to my CF. It's not typical asthma like having attacks. Rather, my exacerbations would be accompanied by a ton of wheezing if I exhaled fast - more so than phlegm, although the phlegm was also stuck down there b/c of the inflammation.

    Anyway, which I was at my worst a couple years ago, we tried Prednisone and my numbers started going up. When I tried to come off it, I had major difficulties. Finally, when I was feeling better, I was able to start tapering off...and I'm still in the process of doing that.

    But yeah, my doctor says I am an anomaly in this respect.

    Everyone else, thanks for the congrats!

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