Saturday, September 19, 2015

Month 1 on Orkambi

Back in July, this new drug, Orkambi was approved by the FDA. Orkambi is the second drug that has come out that actually treats the underlying cause of cystic fibrosis. I wrote a post about it, and you can read that here. After jumping through hoops for my insurance company to cover the quarter of a million dollar yearly price tag, I finally started taking Orkambi on August 14.

 I was told by many others who had already started taking it that it would cause quite a few side effects that would not be very pleasant. One day into taking it, I already started to feel what others had been calling "the purge." My lungs became tight, and I started coughing up a ton of junk. The chest tightness lasted for a few days, and as soon as it started to lessen, my nose turned into a constantly running faucet. They say that the first few weeks is filled with your body getting used to the new medicine and the medicine causing all of the deep down, old mucus and junk to be moved up and out of the lungs.

During the first couple of weeks, I felt pretty terrible, but I just pushed through it. The coughing slowly became less, and my nose slowed down with the running. Throughout all of it, I continued with my treatments and with my workouts which were much more difficult while my chest was tight.

I've been monitoring my PFT at home, and it did seem to drop some. At my last clinic appointment, my FEV1 was 47%. According to my at home reader, I've been running at 43% lately. A month into taking Orkambi, I was due to have my clinic appointment. This past Wednesday, I headed to Nashville for it, but unfortunately, I didn't actually ever make it to Vanderbilt. We got into a car accident in downtown Nashville... only about 10 minutes away from my destination.

My car ended up have some damage that made it impossible for me to drive it. My husband and I spent the rest of the day trying to figure out how to get back to Knoxville without a car. My insurance tried to get me a rental car, but sadly, there were none available in the correct price range. Thankfully, I have amazing friends and family, and we were able to bum rides back home.

Since I missed my appointment, I had to reschedule. I won't have my clinic appointment until October 21 now. So, we wont know for sure how Orkambi is effecting my lung function until then.

I'm just taking it all one day at a time, because it seems from reading others' stories that it takes awhile before you might see any positive lung function changes, and some don't see any increase. It's all just a waiting game right now. I'm still hopeful that I will see some of the benefits that this medicine can make happen. More updates on my progress to come...