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.

Orkambi Video Diaries – Day 1

I started Orkambi this morning! Throughout these first few weeks, I’m going to try my best to provide video updates of my progress in hopes to a) save myself from making the same phone call over and over to my enormous and long-winded family (jokes!..kind of) and b) maybe help other CFers and their families prepare for Orkambi and its intial side effects.

Above is my video for day 1 – at least the first half of day 1…

Everyone’s different so of course whatever I do or don’t experience might not be the same for others taking this drug but I figure it can’t hurt to share this journey as I go.

Emotions are all over the place but I’ll save those for another entry because I’m a wee bit tired and I rented Spy on Amazon. I best get going…Melissa McCarthy waits for no one!