A lot of friends and family members have been wondering how I’ve been doing these past few months since starting Orkambi. This month will mark my 6 month anniversary since starting Orkambi so now is the best time for the update!
I was hesitant about making any drastic claims about Orkambi within the first few months (besides my incredible FEV1 improvement) because a lot of CFers and their families follow me on facebook and on my blog and I’m not so into comparing stories on drugs. At the beginning, I joined all these Orkambi groups and wanted to hear EVERYTHING, and I quickly realized that was a mistake. My doctor told me how this drug affects people so differently. Some people, like me, have seen miraculous results, while others have really struggled when starting Orkambi and then were able to adjust, while a smaller portion had to stop it completely. And we don’t really know WHY, yet, there is so much variation. Not to mention, everyone was comparing side effects and symptoms and this left people waiting to start Orkambi either a) scared out of their minds or b) incredibly confused. Given the fact that we all are at different points in our health, I stayed relatively silent on the whole topic on social media, besides some reminders that everyone is different and to take all of these claims with a grain of salt.
So, although I wanted to scream from the rooftops about how wonderful I’ve been feeling, I also didn’t want to give false hope to those who may not respond in the same way, or undermine anything those who had some intolerance to it were experiencing. That being said, the main purpose of this blog is to update my friends and family about where I’m at, not to reassure anyone who may be thinking about taking the drug that they will have the same response.
As I mentioned, we don’t know why there is such a variation in the ways people respond to Orkambi. My own personal theory, based on nothing but my own experience, is it probably has to do with your existing lung function. I’m someone with “higher” lung function (my fingers keep wanting me to type lunch function….), and I also run a ton so I’m constantly getting mucus out before it has a chance to settle in my lungs.
*gag alert* When I first started Orkambi, I noticed that it was like a mass exodus of stuff in my lungs for a day or so. This could be exhausting if you had poor lung function or were in any other ways weakened (infections, etc.) Thus, my theory: the less stuff in your lungs, and the higher your lung function, the less you experience shortness of breath as all that stuff moves around. Of course, I’m sure genetics plays a role too, and all sorts of other environmental factors that some really smart scientist will have to figure out. Again, no scientific analysis here, completely theoretical!!
The point being: I was lucky that I started Orkambi at a time where I was relatively healthy CF-wise, and at a time that physically I was feeling very strong to start. So what happened from there? Read on.
1) My cough *almost* went away. I can’t remember the last time I had a serious cough attack where I had to leave the room. I’ve had several people remark that they don’t notice me coughing as much. And when I do cough, its more to clear my throat than my lungs being irritated by gobs of mucus.
2) I gained weight! Typically, I would find it hard to keep weight on once it was there. But I’m noticing that I’m becoming a more normally sized adult, with weight on my legs, my face (hey double chin, nice to meet you), my stomach, even my BUTT (Here’s lookin at you Nicki Minaj)! Normally, when I would put weight on, I would get a little buddah belly for a while and then it would disappear. Now, I’m noticing it’s easier to get my pants to stay up and I don’t feel as much of a twig anymore. Part of this could be that I’m 25 and my metabolism isn’t what it was when I was younger. But either way, yay for weight gain!
3) I’m recovering more quickly: A cold used to mean I was on my ass for a while as it crept into my lungs. The one time I did start to get a cold, I somehow magically fought it off. At first, I attributed this to Zycam (love you Zycam), but then someone pointed out that maybe this Orkambi thing has something to do with it. I’m also finding that after being around people who are dripping snot, I haven’t really caught their cold as I expected I would. One can only guess that maybe my immune system is a bit stronger because of Orkambi and not because of luck, but I’ll take it either way.
4) It’s easier to do the things that used to be hard. Mainly, I notice this with hiking and running. I felt less winded during and feel less tired after strenuous activity. Most notably, my dad and I hiked a pretty intense mountain this fall, and compared to the prior year, I definitely took less breaks and felt less like I was going to die this time. A couple people have asked whether I can run further now.. the answer is I don’t know because I haven’t tried. LOL This can be attributed to my own laziness, and nothing else. So rain check on that one, I’ll let you know when/if it happens.
5) I just feel good. I’m not really sure how to explain that one. I guess part of it is having more energy day to day, and part of it is being so grateful every time I pop those two pink pills into my mouth. To have this chance at living a healthy life and feel some reassurance that I might actually make it well into adulthood, is indescribable.
So there you have it! At the risk of sugar coating everything, I want to mention that these past 6 months haven’t been all sunshine and smiles. There have been days where I couldn’t get out of bed, where my lungs felt less than fabulous, and times when I struggled to run. But the important thing is the good days have far outweighed the bad, and the bad days are way less frequent than they used to be.