My Two Favorite Dorks

My Two Favorite Dorks

Thursday, August 12, 2010


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.


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

  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. :)

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

  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. :)

  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. :-).

  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!