About 3 months ago I started a research study for inhaled drug. Lots of people get put on IV/oral antibiotics when they are hospitalized, but scientists and researches came up with a new inhaled drug, but it still needed to be tested. So, I volunteered!
Before I even started there was a lot of testing that was involved. They needed blood samples, my pfts had to be within a certain range, ECG’s, and I had to be 2 weeks off of antibiotics. So after I had met all of these requirements I was ready to get started, or so I thought. One thing that I did not know was that I had to be 4 weeks on my symdeko,so they knew it was safe. And that was hard.
I usually go in a cycle of 2 weeks on an oral antibiotic and two weeks off. Around the end of that second two weeks I get to feeling awful. Sweats and chills, body aches, head aches, tired all the time, and my lungs just don’t feel like they should. So staying off of antibiotics for 4 weeks was a really though thing for me to do, but somehow I managed.
So NOW I was ready. We went to clinic and met with the research coordinator. She informed us of everything that was going to take place. But here’s the catch. I wouldn’t know if I would be given the real drug or a placebo.
I have been off of the medicine for the past week now, and I feel great! I truly think that I got drug. My PFTs are stable, I haven’t felt sick in a long time, and I am keeping up with my running! I feel so blessed that I was/ am able to do this. Not only for me, but for all other CFers out there that may need this in the future. It feels so great to be able to do this, and I definitely encourage that if you ever get the chance you should definitely try a research study.