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Day four was kind of impressive. Nothing ancient or hairy or gross came out, but I easily did a month's worth of productive coughing in the past few days, bolstered by my seemingly unending stream of sputum spitting I was engaged in. Big session in the morning, big session in the afternoon (also...

Okay, this is the last time, I promise. This just occured to me tonight...from now on if I have same-day updates I'll just edit the original post, but this is in the interest of full disclosure: Twice now, since Saturday morning, I have taken my minimum dose of tramadol, a pain reliever. I was...

One other thing. I just got my vest after twenty years of trying last month. And it's a blessing with or without Orkambi. I feel better after taking it, like right after, and also over time. My pulmonologist said that with CF, bronchodilators and even antibiotics were only helpful to a point...

Day 3 was pretty uneventful. I slept in a little bit; having gotten up, started to get ready, and then absolutely conked out for a couple hours. It's the only time I haven't taken a dose within a couple minutes of my target time (9:19, because it's a good spot for my life/schedule and because I...

My bad. Thought I typed it. Last year it was 35 because of limited access to medications and services. Last month after being on pulmozyme and exercising for a few months it was at 43.

Started Saturday morning. 31, male, six feet, 150 lbs. No other major health problems to have any notable influence outside of bronchiectasis. Had a single partial spontaneous lung collapse in 2007 and an embolism almost two years later. First dose took about two hours to get to some nasal...

What mucus is more watery? You said you can't cough it out...are you generalizing and there are some fluke coughs that bring stuff up? Or are they trapped down there and you can feel it sloshing, or feel less dry, etc.? Just talked to the pharmacy a couple hours ago and it's shipping today to...

I was just approved. Sounds like Vertex's insurance verification will have an answer from actual insurance tonight or tomorrow morning...so maybe early next week I'll start and report back in?

No kidding. There are so many horror stories, it makes me really think twice over how it was able to register as an average improvement in trials. I realize some people that feel good and have good results might not be as vocal right now, not everyone has access to the medicine, and the trials...

That's the next thing we can do to raise awareness. Remember the dogs singing jingle bells? We'll just set your farts to music and have the CF Foundation sell it on iTunes as a single called 65 Blowses.

I got told Friday morning that the insurance was likely going to cover me, and that the paperwork just needed to be pushed through for an initial prior authorization. If all goes well, my first dose could be later this week. I'm nervous but excited about my individual tolerance for the apparent...

Thanks trghpu1994 -- not that it was directed at me but contributing a happy story =) And thanks aboveallislove -- some of the extra detail is more useful than what's broadly supplied, like having to take more of something to get an effect rather than not using it entirely. Incidentally, I...

It just seems so disproportionate. Maybe the people who are tolerating it well are just less vocal =) But yeah, makes you wonder how it got out of safety and efficacy with how many different ways it has of hurting people. If it was the Food and Car Administration, and you had to pass similar...

Was it this bad during the trial? I see a few really great stories that make it seem like it does more than even the numbers suggest. Then I see a bit more stories about it helping a teensy bit, but just comforting people in that they might not decline as much. But these first week stories...

I can't unsee, in my mind, the tubes that hook the vest to the compressor(?) flailing around. That would be pretty amazing.

Hah! "Let it go-o-o-o-o-o-o-o-o-o-...." Well, now I feel more encouraged. I've been practicing Hide and Seek, but I need to learn the end bits because her melody goes all over the place. So far it sounds really on-point (not my singing skills, just the translation of the effect). If I can bang...

One thing I've been thinking about doing is singing songs with my vest on, because it's fun and because it sounds absolutely ridiculous. I asked for suggestions at another forum and someone said I should try Hide and Seek by Imogen Heap, basically trading out her chorus effect for a vibratey...