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  1. Replies
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    My daughter always did it twice a day. Qvar,...

    My daughter always did it twice a day. Qvar, Advair, and now Dulera with all three she did them twice a day. So I don't know if there would be a difference doing a stronger dose once a day.

    PS...
  2. Thread: spacer brand

    by 2005CFmom
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    6,330

    Awesome information! I have been meaning to get...

    Awesome information! I have been meaning to get new spacers and this post has made me do it. Can't wait to be able to use the sanitize setting on the dishwasher to clean these. I will admit to hardly...
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    Thanks, we do get the copay assistance for both...

    Thanks, we do get the copay assistance for both drugs! We had switched all of the specialty drugs over to my husbands insurance plan hoping to cancel our second policy once we know everything was...
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    Hi Meg, It will vary from State to State and...

    Hi Meg,
    It will vary from State to State and policy to policy so you will just have to see what the plans cover on the marketplace. We do have an "Obamacare" policy for my daughter, but we also have...
  5. I homeschool too! Jeanne mentioned this thread...

    I homeschool too! Jeanne mentioned this thread when I met her yesterday. Must have missed it because May was absolutely crazy! Graduated my first in May and have a Junior in high school this year. I...
  6. Just got home from our long day. First, we had a...

    Just got home from our long day. First, we had a wonderful visit with Jeanne. It was such a pleasure to meet in person and hear about what is happening at the conference. Then had a nice stroll along...
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    The only time may daughter did pre and post was...

    The only time may daughter did pre and post was when she was going through testing for a diagnosis (at 8 years old). Her test came out fine, no improvement with albuterol, and the tech says, "well,...
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    I had asked my doctor about this because my...

    I had asked my doctor about this because my daughter's breathing test don't show an asthma component and I was questioning the need for albuterol. His answer was that in addition to being a broncho...
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    Have they done a blood IGE test yet? Testing the...

    Have they done a blood IGE test yet? Testing the sputum won't diagnose ABPA as far as I know. My daughter cultures aspergillus but they have not treated it because her IGE levels are still low.
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    Yep, I'm in California so it is either find a way...

    Yep, I'm in California so it is either find a way to repurpose or they go to the landfill. I will definitely check out some of the local pack and post places. That is a great idea!
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    Styrofoam Rx boxes

    So I searched the old threads, but was wondering if anyone has found a place to "donate" or recycle the styrofoam boxes that pulmozyme is shipped in. I have given away to friends and family, but we...
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    I agree with Aboveallislove. I wholeheartedly...

    I agree with Aboveallislove. I wholeheartedly believe in symptomatic carriers, but 43% PFT seems pretty low to be attributed to carrier status only. Something else is probably going on as well. Get a...
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    Prior Auth went through, approved for one year....

    Prior Auth went through, approved for one year. Now we are waiting for Accredo to finish processing the Rx. My daughter will be home from camp on Saturday, so hopefully we can get delivery by Friday...
  14. My daughter has only been on IV's twice, both...

    My daughter has only been on IV's twice, both times we tried orals first. I think it is pretty standard to try orals first unless the culture comes back with a bacteria that shows resistance to oral...
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    I had heard something about the Carcinogen study...

    I had heard something about the Carcinogen study was being required, but that is the only part I the rumors that I had heard before. The prescription information about Orkambi does mention that no...
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    Yes, we are so excited! I often hear about people...

    Yes, we are so excited! I often hear about people that had their worst lung decline at college and that always worried me. Hoping this drug keeps her lung function stable!
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    Update: Waiting on Prior Authorization to go...

    Update: Waiting on Prior Authorization to go through then it will be filled by Accredo (oh, joy...sarcasm). Copay with the GPS assistance will be $15 per month. Hoping to get it by the 1st of August...
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    Thanks Stephen. I spoke with Vertex GPS today...

    Thanks Stephen.

    I spoke with Vertex GPS today and they are in the process of contacting insurance to figure out what the copayment will be. I should know by early next week what their assistance...
  19. My daughter is very private about her CF. Her...

    My daughter is very private about her CF. Her close friends know (and I'm sure others do to), but if someone questions why she is doing something she will rarely say, "because I have CF". If they...
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    I don't quite understand doctors not prescribing...

    I don't quite understand doctors not prescribing it yet (except as in your case with liver issues) and taking a wait and see even for "healthy" patients. Isn't that what the trial was for? And unless...
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    We have the Respirtech Encourage system, but the...

    We have the Respirtech Encourage system, but the manual doesn't say what these numbers mean. I really never looked at them. But, my guess is that 228:43:10 is the number of hours on the machine. My...
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    Went to clinic yesterday (Kaiser in Los Angeles)...

    Went to clinic yesterday (Kaiser in Los Angeles) and the doctor was ready to fax the Rx to the specialty pharmacy. I was not ready to pay a 10% copay. They did not have any of the Vertex GPA...
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    I think we crashed the Vertex website trying to...

    I think we crashed the Vertex website trying to get more info....lol
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    I'm sorry they took this long to give their...

    I'm sorry they took this long to give their opinion. I don't have any personal experience with it, but if you search there are threads out there on this general topic. Like this one:
    ...
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    I think it is good enough to run Albuterol and...

    I think it is good enough to run Albuterol and Hypersal, but not powerful enough to use for Pulmozyme or antibiotics. We don't use the battery power, just use it plugged into the "cigarette lighter".
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