Tomorrow morning, I have my Pulmonary Function Test and some blood tests. A lot is riding on the results of these tests.
Providing my lung function is at least better than it was two weeks ago, and not going in the opposite direction, and my Liver function blood tests don’t show any irregular numbers, I am planning to finally begin taking the new Cystic Fibrosis drug, Orkambi.
I am nervous. First, I don’t want to oversleep. I need to make sure I have enough time before my very early appointment to clear my lungs, and it can sometimes take a couple of hours for that to happen. The challenge is that my appointment is at 7:50 a.m. I am no longer a morning person, so I hope to fall asleep early to make sure I can get up when I need to be up.
Second, I want my numbers to be in the right ranges so that I can start Orkambi. It’s best to begin taking it when my lungs are relatively healthy, because there are known and expected side effects that can mimic a brewing lung infection. In addition, the medication can effect the liver, so we want to make sure we have a baseline of where they stand at the beginning.
And lastly, perhaps ironically, I am as scared to start Orkambi as I am excited to take it. There are side effects, some severe or intrusive enough to stop people from taking the drug. I remind myself that yet others have experienced such positive changes that have literally changed their lives, and that there are thousands of CF patients sitting somewhere in the middle.
So we are approaching Orkambi with cautioius optimism.
As you can see, I’ve had it in my possession for almost a month. I’ve been staring at it, waiting, like I was a child waiting for Christmas to arrive.
And now, it’s the night before the big day. Time to get some sleep. I have something big to prove tomorrow!