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The funny part of that is, years ago, he used to say things that basically were equivalent to, "You need to suck it up, man up. I have other CF patients and they look like they're F'ing zombies next to you. Why are you complaining? Fight while you still have strength!" Then I was just in last...

I suspected one with melatonin, but it was not reproducible for me. I still highly suspect that it lessens the effect of tramadol (similar to tolerance, where you would need more to achieve the same result) but I won't be able to test again for another week or so, if ever (I say if ever because...

I've actually burned through that entire list a few times, but it never hurts to try again. A couple hours on the phone is definitely worth sticking around longer. Thanks for the assist, and the caring and watchful eye =) It's much appreciated and genuinely helpful support; it's symptomatic of...

I was told about proper ones in Tampa, Gainesville and Jacksonville. I'm in Melbourne, so Orlando's the closest big place, but everyone I try to contact there is either pediatric (like Nemour's) or can't give me a straight answer on whether or not they're a proper clinic, how they identify, what...

Out of curiosity, how were you able to notify them? If I call and tell my doctor's office my skin is on fire and spider eggs are falling out of my tear ducts, they ask me to make an appointment for the following month. I definitely definitely definitely got so, so worse before I got better...

Middle of Day 18 I feel like I need to interject early this time around. In the interest of full disclosure, I stopped taking Pulmozyme about a week ago. I intend to get back on it as soon as possible, but the storage and cleaning conditions for my mouthpiece were not optimal and I think it...

My team is actually just my pulmo office. They've been nice enough in trying to help facilitate me getting the meds, but his office got so big so quick, I think he's overwhelmed by his own expanded empire. As a result the hardworking office staff, in spite of their hard work, allows stuff to...

My tether doesn't last two years...but it seems from reading accounts here and on Twitter and Reddit, that just massively tons of people got their ass kicked for at least the first few weeks....and then, for those that did get better, things turned around(ish) at that point. I'd like to at...

Day 14... Sorry for yet another absence. I have had a pulmonary embolism before, I've had a lung collapse before, and I've been completely fecally impacted twice. Those were very painful. The collapse was itself especially scary. That said, it was this one big focus and then you dealt with...

Thanks for the detail! Really helps flesh things out. It does seem like bad news if you stayed in one place for a really long time and then plummeted. Are you saying you were able to get access to meds for both genotypes, then? I think there was a group of folks with Kalydeco, right, where...

Would you say you might have been worse off if it hadn't been around? In other words, what was your decline like before versus after? Is your current baseline different than this last reading? Would you mind sharing any other broad aspects of your regimen so we know what goes into the mix, like...

Day 10 No real changes. Had pockets where I tried running and recovery wasn't so bad. I can tell something good is in the making but for the most part I'm still fatigued and beat up. No more pain meds either...blech. Oh, and I got breathing super heavy earlier and started to cough up blood...

I live 30 mins south of Cocoa Beach in Melbourne (hi Jaimers!): 2.) Dr. Zaki Elmaghraby is smart, friendly, and has a good sad/scared/BS filter, so you can purge to him, and he'll sift out the actual puzzle pieces and listen and work with you to get stuff done. He's also well-connected and open...

I don't mind at all. $347.76. I was with CIGNA but then after the Affordable Care Act got going, their reaction was to charge me seventy dollars more a month for another plan with worse coverage. I poked around for almost an hour and didn't believe my United plan when I saw it. It's comparable...

Days 8 and 9 Sorry to disappear...I'm back! Was across the state seeing my cousin in a play and trying to stay awake ....because I am sick, not because she's boring. She did a good job! =) Not much to report. Still tired, still beat up, still draggin' butt, still coughing things up...

I got a United plan through Florida's marketplace, and the premium is a kick in the pants, and sometimes you have to massage their human errors/BS/misfiling/misunderstanding of things through to keep things friendly and orderly, but out of the box the out of pockets and co-pays are low and it's...

Starting Day 7 early and will come back to edit....because... I feel GOOD. Don't get me wrong, if I tried running I wouldn't get very far, and I'd feel tight and congested. But, like, my limbs...I haven't been doing much exercise lately because I've felt so bad and yet I still feel nimble and...

Day 6: "O, is for the 'Ow' I yelled, twelve times, R, is for the way I ralphed, up slimes K, is very, very, Kalydecordinary, A, is even more than I thought I had signed up for M! is all I say when I, can't breathe B is biting on fat, I teethe, I am almost done with my first week, and...

Day 5 was scary! I woke up last night around 2 in the morning, and in a matter of about 10 seconds I went from just being tired and uncomfortable to feeling soreness then a popping sensation and then doubled over in pain. I couldn't make it better or worse changing my position and it became...

I have it handy in the other room: "If a patient misses a dose and remembers the missed dose within 6 hours, the patient should take the dose with fat-containing food. If more than 6 hours elapsed after the usual dosing time, the patient should skip that dose and resume the normal schedule for...