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I already had trouble sleeping before, because of other biological issues and my life choices with my schedule, but when I first started Orkambi, the shortness of breath got bad enough that I simply wasn't taking in enough oxygen as I slept, which made it rough to stay asleep. I had pulse ox in...

Day 31 Some trouble staying out of bed this morning but less sore than the midday thing from yesterday. I think the only thing that's changed is the reintroduction of the pain medicine so I might have to watch that more carefully or taper right out of it already and truly just use it for huge...

I've been clicking people's user names on here to see their posting history to track individual progress. I too did not know there was a blogging area. I can't see much on my phone and the connection isn't amazing so I'll have to check it out when I get into work tomorrow morning. Day 30 had...

Thank you for your thoughts and prayers! Day 29 Had caffeine late last night so sleep wasn't amazing but wasn't bad either. I got up okay the first time, but in an attempt to catch up I tried napping because my unrestored body was feeling tired and beat up a bit. I managed it though and once...

Day 28 Gratefully, not a lot to report. It says something when shortness of breath is down to just isolated incidences you can identify. Especially when you have bronchiectasis. 15-20 secs top, maybe four times spread throughout the day. Little bit of weakness and fatigue more than I've been...

Incidentally, regarding Day 26... For the first time since I started taking Orkambi, shortness of breath just wasn't an exceptional factor. No pain, got a LOT done, super productive at work. Still room to improve, because I had to catch my breath from some stuff, especially early on, but by the...

It is not my intention to appear cavalier about it. Like everything else I've been experiencing, I am just documenting for the sake of completeness. I've also opined that it is both scary and annoying and frustrating. I have absolutely talked to a doctor about it, because, well, who wouldn't...

Day 26 (Wednesday) Walked through a smoke cloud going into work today because of the neighboring telemarketers, and that seemed to be the straw that broke the camels back. Started bleeding in front of my door, fumbling for the keys, hoping not to run the carpet once I got inside. Made it free...

This is absolutely amazing, and I'm so happy for you! I remember a few years back when it took a really long time between hospital visits. It makes a huge difference. I think this might be one of the first times I've seen where a relatively high FEV to start has documented overtly positive...

Day 25 Another day with an early dose of Tylenol. Weaning off...at 2/day (they're extended release), my box only has enough for twelve days, and it says on the package you ought not to be taking for 10+ days without talking to your doctor about it (I've skipped, and I think I've only gone...

I started on a Saturday as well; it gave a clean break that didn't screw with my work schedule, and it helped me make sure I was watched in case anything went screwy. I'm glad you're still deciding to take it; you might not have the contrast in feelings I had, but I feel like what I'm going...

Day 24 (Monday) Wasn't able to get on here last night, apologies. Little, itsy bit of coughing up blood in the morning. It probably last a full minute, but because it happening at all sucks, it seemed like longer. It only qualifies because it was an "episode" like the others, where you feel...

At the risk of sounding gross, my GI flipped a switch almost from the moment I started taking it. I eat very healthy, and my "formation" was relatively inconsistent. Mostly softer than not, but occasionally agonizingly non-productive (impaction) and then super-super soft. BUT, the thing that...

Days 22 and 23 New theory with the sodas. I really, really don't like coughing up blood. At the risk of sounding spoiled, for as much as I count my blessings (and they are many, if not always obvious to others), I can't help but sometimes feel a little defeated when things go 90% well, and then...

Day 21 I coughed up blood this morning and woke up feeling decently stiff and sore, so there was some small concern I was slipping back a tiny bit today. That said, a few days ago, I did that short walk with my folks, and the next day I did a longer walk with my mom where I had to stop a few...

I get told a lot I should write. Even a "psychic" at my sister's birthday party =P I happen to be writing a book, but it's more for going through the motions, one of those "free weekend release then it sells 17 copies" Amazon CreateSpace kind of deals. If anyone had a chance to read it, CF or...

I think part of it is, like going to McDonald's. If they take your order, smile, the food's cheap, they ring it up right, it comes out in 3-5 minutes, you scarf it down, wave goodbye...that's fine, that's good, that's what's supposed to happen. Nobody wants to give out awards for meeting...

I did not have access tonight to a computer so I don't have a full report to give since I'm on my phone. Oboe, thanks for all the incredibly thorough insight. As for the checking in issue, if you guys want me to, and it is genuinely helping even one person, absolutely I'll still write. It's...

Gammaw — It's down to two... PCCA in Jacksonville, which was well regarded by the Mayo Clinic when I was up there, and Dr. Layish's office around Orlando. I've got recommendations from both (some of which are corroborated here and in other threads) and they're being vetted for insurance...

Day 19 I find this amusing, because I started on 9/19, taking my first dose at 9:19. And this happens to be the first real day of note, Day 19. I am getting better. Not necessarily better than I was, but WILDLY better than I've been. The progress day to day in the past half week has been at...