It has been a month on Orkambi, and I’m already starting to feel the effects in a very real way. I didn’t want to post 2 weeks in because I knew a lot of what I was feeling was the placebo effect, but I have begun to notice my “new normal.”
To start, and to clarify, Orkambi is not a cure. Many people have asked if I get to stop doing the treatments I do everyday and the answer is no. I’ll still have some mucus in my lungs, I still have a serious bacteria in my lungs, and I still have CF. Orkambi will just help to make it a little more bearable and hopefully, most of all, will decrease the amount of times I get sick.
Here are the most notable things I’ve noticed:
1) On just about day 1 or 2 I woke up and noticed that my lips were incredibly smooth. So much so, that I couldn’t stop touching them! I always have dry cracked lips from my salty skin/sweat/saliva so this was a huge shocker. It was the first “new” thing I noticed and actually the first thing that brought me to tears. Things were changing and that excited me!!
2) I don’t cough as much. I notice this mainly when I’m at work. I become acutely aware of my cough at work because it is quiet and I am aware when I may be disrupting people. But I feel like I’ve gone full days without an uncontrollable cough. Of course, I still have to clear my throat throughout the day, but I haven’t felt that urge to cough that you can’t suppress as often.
3) I’m becoming acquainted with new sections of my lungs. While on a run with my friend, I was trying to describe what it felt like to breathe into sections of my lungs that I never breathed into before. I feel like my lungs have become a massive expanse of new territory, the fresh air entering passageways that haven’t been open before. I went to my first yoga class in a while recently and as I took deep inhales I felt as if I could breathe forever.
3) I’m tired. Like, really tired. This is a side effect of the drug that I’m hoping I’ll get used to or outgrow. During the first 2 weeks of placebo effect, I felt like I could conquer the world!!!! But then reality set in and I came to terms with the fact that I was very exhausted. It’s really hard to wake up in the morning and when I’m not working, you can bet you’ll catch me napping at some point during the day. I’ve tried to combat this with exercise, but to no avail so far. I’ll keep you updated on this one.
4) My lungs are noticeably less congested. I always do my treatments right when I wake up, but when I go away for the weekend or on vacation, I usually wait until night time to do my treatments, just because I tend to get up and go when I’m on vacation. Usually, by midday I start to notice that I haven’t done my treatments yet and feel pretty congested. But lately, on Orkambi, I haven’t gotten that feeling. In fact, once or twice I even forgot to even do my treatments which is something I NEVER do (and which I don’t condone. You still have to do all of your therapies while on Orkambi.) The point is, I was feeling so good that it didn’t cross my mind and that’s unbelievable.
5) My sinuses cleared up. This came even before the lungs. I’ve always had chronic sinusitis and have to blow my nose all day long. But my sinuses are now completely clear. I don’t feel the sinus pressure and post nasal drip that I always feel and it is much easier to breathe out of my nose.
At the risk of sugar coating things, I tried to include at least one of the negative aspects of the drug (the fatigue) in this list, but honestly the good has outweighed the bad. Yes, I coughed and coughed the first couple of days on the drug, and that wasn’t fun but it wasn’t unbearable. I attribute the fact that my lungs could handle that intense coughing to my running routine (both before to strengthen my lungs and keep them clear intially and during, to clear away all of that left over mucus). Yes, there are huge risks associated with this drug and my liver, and though I haven’t noticed anything so far, only time will tell and that is concerning. But if the way I feel now is my “new normal,” then, I’ll take it. I’m not expecting a miracle, but I am expecting to feel better day by day and to not get sick so much, and maybe even to live a long long life. It would take another whole blog to detail the emotions I’ve been feeling while on this drug, so for now we will just say I’m wicked excited and incredibly grateful.