Goal = 40%

I just had clinic this past Monday and my lung function stayed steady at 34%, what it has been since April. I know that lung function is just a number and that a person with CF shouldn't get too wrapped up in it. That it's more about how you feel, rather than what number you're at BUT my goal for the last few years now have been to get my FEV1(forced expiratory volume per second) to at least 40%. Ever since I got the flu back in 2013 I've been hanging around in the mid 30% range. The reason that I personally want to get to 40% is because I would become eligible for so many more clinical trials(and it is always nice to see that number go up rather than down).

The Cystic Fibrosis Foundation has recently put clinical trials at the forefront. Last month they added a Clinical Trial Finder to their website. You can search by location, by mutation, even by lung function! Research into the disease has come leaps and bounds because of those willing to participate in clinical trials. I can't wait to do it again! Last September I was lucky enough to participate in a clinical trial for Orkambi for those with lung functions lower than 40%. From what I remember, it was a 24 week trial and took place at the hospital where I go for clinic. Unfortunately, I didn't experience any benefits of the drug, however; there were no negative impacts to my health either and I was able to complete the full 24 weeks. Even though Orkambi was not able to help me, I know that there are other drugs in the pipeline that have the potential to help and possibly increase my lung function.

This may be an unobtainable goal, since it's often said that once enough damage to the lungs have been done, it's often hard to reverse it. I'm going to stay optimistic, with enough hard work and motivation(and possibly some antibiotics thrown into the mix), one day I might get there. Here's to hoping!

For those with CF or any other kind of condition, have you ever participated in a clinical trial?