Participating in studies

There were many things I didn't mention in my last post that contributed to my busy year. One of those things is that I am participating in a few studies. One study has me on aztreonam lysine, which was denied FDA approval in the first round. As a study participant, I get the drug free, even without it being approved yet for general use. It is a great help! I very much like the months when I am on it. (Every other month is tobramycin.)

Another study - and another one of those things that contributed to my Year Of Suck - has to do with CF and GERD. In order to qualify for the study, you have to have GERD (gastro-esophegeal reflux disease). It does not have to be severe, just measurable. It's the measuring that was torture. Apparently I don't tolerate having ph probes snuck down my throat very well. That was a miserable 24 hours. The results were that I do indeed have GERD. So let's get started on the study, which is to see if proton pump inhibitors can be helpful in reducing exacerbations by reducing the amount of acid coming up and being inhaled into the lungs, especially during sleep. I am on some little blue pills. They're either Nexium or they're not. This being a double-blind study, neither I nor the researchers know - I am assigned a number and that number was assigned the drug (or the placebo) randomly. But I can tell you this: I've been doing this for six months now and I have only had a minor case of heartburn ONCE. My giant bottle of Tums is sitting in a cabinet unused. Nice to know what's going on and how to treat it, but...yeah, another fucking pill, another fucking thing to keep an eye on.

The third study I participate in is off and on. Rather, I provide samples of my phlegm for a researcher in Virginia. She's working on measuring viscosity and figuring out different ways to break it down. D-nase (Pulmozyme) is one drug which does this, though not like a magic wand. I think she's searching for the magic wand. So, anyway, periodically, she sends me a pouch of collection tubes, and I fill them up. It is rather gross, catching all ones phlegm and keeping it.

Click the grinch to see what I coughed up in just three days, including taking the collection tube with me on 2 runs. Warning: gross.