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Yes, I’m aware that it’s summer, but it’s time for me to come clean. I’ve been studying. I joined a CF research study back in June for Vertex Pharmaceuticals, and the “investigational drugs” were the VX-661 and VX-770 (in phase 2). The study is a spin-off of Kalydeco, the exciting drug that was released recently, but only to a small percentage of people with CF. This time they’re trying to formulate the medication so it helps patients with the same CF mutation that I have.

What I’m trying to say is that this medication could be really really good. The study, however, had some ups and some downs.

The downs:

  • Lots of visits, at least one every week. And they were all several hours long.
  • Lots of blood draws – over one 24 hr period I had 16 pokes (for 10 separate draws). Uggghhh. But. Most of the visits just had one blood draw per visit, which is waaaay easier to do.
  • The standard love of documentation. Of EVERY. THING.
  • This study overlapped a year-long research project I’m working with U of M on (for me that means collecting samples of stuff you don’t care to hear about and mailing them to a very unfortunate lab assistant), and there were definitely days where I felt like I was dedicating too much of my personal time and energy to the world of science. Enough already!
  • For the 28 days that I was on the study drug (or placebo), I had an arthritis flare-up that would not go away. Not my favorite.

The ups:

  • It was a chance to participate in research – which I think is always good, no matter what my role is.
  • I think I may have been on the study drug (or the placebo was some really good  stuff).. My lung function has been great!
  • I’ve been feeling so good that my health was stable enough to stick out the whole 2 month study (last day was yesterday!) and I’m really thankful for that.
  • It gave me a chance to see what it’s like to be a CF patient of Spectrum Health, instead of U of M where my CF doctor is. Spectrum is much closer to home, and someday when my doctor retires (please never!!) I’ll have to make a choice between someone new at U of M or the younger but much-improved CF clinic here in Grand Rapids. This “trial run” was really useful that way.
  • I got paid for this, which made it a lovely little part time job. I like to think that I would still do these things without being paid.. But some days are less pleasant than others.. And frankly it did help to look forward to a treat.
  • Speaking of treats, on one of those longer days, I came home to find a new little succulent and cat card waiting for me. Thanks, Mol! It totally made my day. And that card is still repeatedly making my day. I mean look at it! Floral swim cap!

Yesterday was my final study visit, and I’m glad to be done BUT I’m also glad that I did it. I’ve never been to the doctor so much in my life while feeling so healthy. It’ll be next year probably before I find out if I was given the study drug or the placebo, but who knows, by then I could be knee deep in the next study.

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