Orkambi Video Diaries – Day 18

Haven’t updated in about a week so I thought I’d let you guys know I’m feeling consistently better. I can’t believe it’s been 18 days already. But then again, also kind of feel like I’ve been on Orkambi forever. Thanks to everyone for your kind words of support (and for watching).



Orkambi Video Diaries – Day 11

A day late posting this! Here’s my video update from yesterday, day 11 on Orkambi. Yesterday I was feeling the best I’ve felt since starting Orkambi. Today, though I’m a little less bright-eyed and bushy-tailed, I’m still feeling much better than last week and gearing up for week 3 on Orkambi. Stay tuned…


Orkambi Video Diaries – Day 3

I really wasn’t going to post a video today. I’ve updated twice in two days and I imagine my Facebook friends are growing quite Ali weary. Also, it goes against my better judgement to show the internet how truly awful I look today. That being said, I went ahead and made a video anyway because it’s my worst day on this drug so far and it might be helpful to document the bad days along with the better ones.

When I was researching Orkambi before taking the drug, I watched a lot of Orkambi videos and it eased my mind to see what the bad days looked like. It helped me prepare and psych myself up. And even though I feel (and look) pretty crappy today, I assure you what I’m feeling is nothing anyone living with CF can’t handle. I think we’ve all seen worse days.