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Type: Posts; User: erock77

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  1. Replies
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    I came on here looking for more solutions too...

    I came on here looking for more solutions too since I'm relapsing today, but have been pretty good for a while. I'm pasting some tips I posted before...

    How bad is the hemoptysis? I've had 6...
  2. Wow, that's pretty f'ed up. I wanna like Vertex...

    Wow, that's pretty f'ed up. I wanna like Vertex b/c they're creating ground-breaking meds for us, but their business practices sure make it hard to be a fan. How can they hold strong that their...
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    4,503

    Can someone clarify this key bullet: "-U.S. NDA...

    Can someone clarify this key bullet:
    "-U.S. NDA and EU MAA planned for the third and fourth quarters of 2019, respectively-"

    Does that mean they're applying for approval? Or they're expecting...
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    11,175

    I'm a solar engineer, degree in Mechanical...

    I'm a solar engineer, degree in Mechanical Engineering.
    I thought similarly when I was in high school, thinking I shouldn't pursue anything physically demanding. Working from home didn't really...
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    4,272

    Problems gaining muscle/strength (with CF)

    Hi,
    So I've been weightlifting for the better part of 5-7 years. I've done a fair bit of reading and occasionally worked with a fitness trainer to come up with maybe 4-5 programs over this time. I...
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    3,729

    Kenna: It's just called Sodium Bicarbonate. It...

    Kenna: It's just called Sodium Bicarbonate. It comes in 5ml vials and you need syringes to extract. Hasn't gone the route where there are mass produced ampules yet. Yes I have noticed a difference,...
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    3,729

    Seems like she's doing the right things. When she...

    Seems like she's doing the right things. When she huffs: take a deep breath and hold several seconds if possible. She may already know this. Obviously bronchodilators can help.
    Another note, I've...
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    1,576

    Hi, I use the Pari Trek S, the battery is a bit...

    Hi, I use the Pari Trek S, the battery is a bit pricey so there's an option to just get the compressor. It comes with a car adapter or can plug in the wall.
    I read a bunch of reviews last year and...
  9. Has anyone tried this yet or is there some study...

    Has anyone tried this yet or is there some study showing results?
    I'm intrigued and sent the info to my doc for their opinion.
  10. Replies
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    1,693

    How bad is the hemoptysis? I've had 6...

    How bad is the hemoptysis? I've had 6 embolizations, it's been several years since the last. I would have hemoptysis pretty regularly, but we only embolized if it got really scary. Like 10 minutes...
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    1,313

    Yes. Used to happen to me regularly, I couldn't...

    Yes. Used to happen to me regularly, I couldn't run across the street to catch a bus without coughing up blood. Take it easy for a bit (days), then ease back into it. For me I think it relates to how...
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    4,391

    Wow I can't believe it's been over 3 years since...

    Wow I can't believe it's been over 3 years since I wrote this. I recently had a streak of at least a few months without this symptom. Sleep is glorious! Rather the lack of is horrible.
    Anyway it...
  13. I only arrived to a system I'm pretty happy with...

    I only arrived to a system I'm pretty happy with in the last couple years. I used to dispense pills each time, usually twice/day. I moved to the weekly pill boxes where I spend like 10 minutes w/...
  14. mucus clearing in throat/trachea? Tips anyone?

    I'm surprised I couldn't find this topic, but sometimes I feel so much secretion in my throat I feel the urge to clear my throat a lot, sometimes loudly, sometimes it starts to hurt from this. It's...
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    7,610

    Awesome! Thanks for sharing. I'd love to hear...

    Awesome! Thanks for sharing. I'd love to hear from others too.
  16. Replies
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    1,008

    Maybe it was a random panic attack. The fact that...

    Maybe it was a random panic attack. The fact that it bounced back so fast implies it's not CF related.
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    Vitamin K and particular CF specific ADEK...

    Vitamin K and particular CF specific ADEK vitamins could help. The ADEK is water-soluble so we can absorb it better. It helps your clotting ability. I used to get bleeds about monthly but much more...
  18. It still sounds like you're not doing a proper...

    It still sounds like you're not doing a proper sinus rinse. The 'cone' attachment is key I think, no matter what method you're using to create a seal on your nostril so water & air doesn't leak out....
  19. It sounds like you're not doing a proper sinus...

    It sounds like you're not doing a proper sinus rinse, squirting a 20ml syringe up your nose is like just wetting the bottom surface down, no matter how many times you do it. I'm using almost 500ml in...
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    I moved out after college, I was a little worried...

    I moved out after college, I was a little worried but excited too. I was already pretty independant with all the CF stuff, so the challenge was the typical stuff. Setting up an apartment, buying...
  21. Only 20ml in your sinus rinse?? You need to do a...

    Only 20ml in your sinus rinse?? You need to do a lot more to flush it out. The standard Neilmed squeezebottle is 8oz, but I bought a 16oz online which makes a huge difference for me. One tip I've...
  22. As someone who was alive and mingling w/ CFers...

    As someone who was alive and mingling w/ CFers before the days of isolation, it's not that dire. However you should be wary of any new bugs you guys culture or when you get sick. If one of you gets...
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    I've had to explain many many times, it varies...

    I've had to explain many many times, it varies slightly based on how much details they want to know. But usually goes: "so you know how you have a thin slippery mucus lining in your lungs, it...
  24. me too please. erocks77 [at] gmail.com Try...

    me too please. erocks77 [at] gmail.com
    Try posting it elsewhere and linking it to here.
    Also for others, I recommend not writing your email out properly, this site is searchable and bots will...
  25. I have Cali GHPP and am now offered insurance thru job, do I have to take it?

    Only relevant for Californians.
    Since I've gone part time 2 years ago I wasn't qualified for the core private insurance plan they offer through my work and have used GHPP solely. I haven't had any...
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