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.