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  1. Holy cow Ratatosk, that.was.awesome!!! Thanks...

    Holy cow Ratatosk, that.was.awesome!!!

    Thanks so much for posting it. Within a couple minutes they had faxed my letter to both of my representatives. They do it all for you. Wow!

    Please...
  2. Here it is! Unfortunately I'm not sure if Jenn is...

    Here it is! Unfortunately I'm not sure if Jenn is still with us. :( Maybe someone else on here knows Jenn?
    ...
  3. I'm so sorry for the crappy situation you're in!...

    I'm so sorry for the crappy situation you're in! :( We did have a member here who figured out how to get home IVs through original Medicare but I haven't seen her around for awhile. Pretty sure her...
  4. Me again! I think you'll do better there in...

    Me again!

    I think you'll do better there in terms of allergies. The air will also be drier and that may help too.

    Also, even though Moogie is short-haired he may LOVE the cold and snow. ;) I'd...
  5. Hey Miss!! We looked at Colorado too, before...

    Hey Miss!!

    We looked at Colorado too, before we moved back to Nebraska. I think it's an awesome place. I've always heard amazing things about National Jewish. I saw Dr. Nick once when I went there...
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    Funny anecdote

    Just thought I'd share a something that I found amusing. In my 36 years as a CF patient I've heard a lot of things, but this was a new one.

    I went to the lab at my CF hospital to have my blood...
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    Hi again all! I'm sorry for the tone of my...

    Hi again all!

    I'm sorry for the tone of my previous post being negative/defeatist. I'm going to be honest, this whole issue has sent me into a tailspin. Since election night when the writing...
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    Thanks for the uplifting story about your...

    Thanks for the uplifting story about your daughters J! You must be one amazing family. How cool that they are there advocating for us.

    Great list of those on the fence. It looks like Rob Portman...
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    Grrr Jeana you're correct. :/ My original post...

    Grrr Jeana you're correct. :/ My original post is old (from early March) and was in reference to a draft of the House bill. You are correct that this Senate bill would allow for the return of...
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    Hi Shay, I get a new one every month with my...

    Hi Shay,

    I get a new one every month with my Cayston so i'm afraid I don't have any advise on where to buy them for out-of-pocket for a decent price.

    I don't replace every month and keep a...
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    Hi Jpear, I think your message is directed...

    Hi Jpear,

    I think your message is directed more at Heather, but wanted to say that I'm still around. :) Still doing pretty well at 36. I'm still PI on paper, but require few to no enzymes and am...
  12. And it has passed the house....

    And it has passed the house....
  13. Only have a second but just read an article that...

    Only have a second but just read an article that states this plan will allow for the return of lifetime and annual caps. :(
    ...
  14. Thread: IV protocol

    by triples15
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    Hi again Love! Neither of the 2 centers I've...

    Hi again Love!

    Neither of the 2 centers I've been to use that protocol. When I was younger/healthier and bounced back much quicker we always did 2 weeks, regardless of whether I stayed in the...
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    So glad to see your other update that DS is...

    So glad to see your other update that DS is feeling better and PFTs bounced back. PHEW!! I'm so happy for you guys.

    RE; the PICC removal, I concur with Penny, he shouldn't even feel it. ...
  16. Running shoe advice (somewhat off-topic, yet on topic ;) )

    Hi All,

    My lung function has see a small decline at each of my last two check-ups. I don't have any increase in symptoms or feel "bad" per se, so we are not treating it at this point. My doctor...
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    Hi Love! Sorry, obviously no input in your...

    Hi Love!

    Sorry, obviously no input in your area, but wanted to chime in with a couple thoughts on what to ask. One thing that has made a pretty big difference in my experiences has been who...
  18. Glad you picked something, but ugh that they...

    Glad you picked something, but ugh that they wouldn't sell it to you! What the heck? I'm trying to understand that logic, but oh well.

    Anyway, wanted to mention while it's not a gaming system,...
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    Awesome Joe! Thanks so much for the update. ...

    Awesome Joe! Thanks so much for the update. Sometimes we never hear and are left wondering. I'm so happy for you and your family!

    Take care,

    Autumn
  20. It looks like, as of today, the White House is...

    It looks like, as of today, the White House is looking to bring about another health care bill. This time, the pre-existing condition clause is on the chopping block. From my very basic...
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    Thank you Love! So exciting.

    Thank you Love! So exciting.
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    Whoop whoop! ;) Will you be listening tomorrow...

    Whoop whoop! ;) Will you be listening tomorrow (well today actually)? Please let us know if you hear anything noteworthy!
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    From your lips to Vertex and the FDA's ears J!...

    From your lips to Vertex and the FDA's ears J! Let's hope they move quickly.
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    Wow. :( Talk about scary. Basically any shred...

    Wow. :( Talk about scary. Basically any shred of privacy from employers could be stripped away. The real question is, what can they do with the information? What is the point of an employer...
  25. Hi again Jason! We recently moved back to...

    Hi again Jason!

    We recently moved back to Nebraska, but I did have BCBS of TX for about 2 1/2 years. It was through my husband's employer and was pretty good. I can't recall having a problem...
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