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Type: Posts; User: Kristen

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    PARI eFlow Questions

    I got one with my first dose of Cayston. I'm not sure if the eflow is FDA approved for anything else, but I know the head/cup that comes with Cayston, called the Altera, is only approved for Cayston....
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    Never had a tune up

    What do you consider a "tune-up"? Based on this definition:

    "A "tune-up" is a term used in the cystic fibrosis community to refer to a preventive course of intravenous antibiotics and respiratory...
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    D508/R117 mutations

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nocode</b></i> Am I right in assuming that just because Kalydeco works on R117H, it doesn't mean that it'll work on R334W? Great to hear...
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    D508/R117 mutations

    I am surprised your CF specialist is not having you come in every three months. Is he/she associated with an accredited CF center?

    However, I will add I have always had "mild CF" and have always...
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    D508/R117 mutations

    Kittenface, ditto that you need to find a CF center. You should be getting a lung function test every three months. There are many CF meds available that should improve your quality of life AND your...
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    D508/R117 mutations

    I have those mutations. I was diagnosed at six months due to salty tasting skin, but I didn't show symptoms until I was older. I'm doing pretty well. I get recurrent sinus infections and bronchitis,...
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    keeping on top of meds

    Most of my meds come in a three month supply through a mail order pharmacy, and I order them all at the same time, so that helps. The two that don't (pulmo and Cayston), I have to order through a...
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    Sweat test result and menstrual cycle

    I have heard of a fertility detector that measures sweat levels:

    http://ladytimer.com/ovwatch.html

    From that website: "The OV Watch Fertility Monitor keeps a tab on the Chlorine levels in her...
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    The Best Exercise to Raise PFT scores

    Another vote for running!
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    What year were you diagnosed?

    I was diagnosed in 1977 when I was about six months old. I think I was VERY lucky. I had zero symptoms of CF. My grandmother was playing with me and nibbled on my toes and said to my mother, "Oh! She...
  11. Thread: Leaving

    by Kristen
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    Leaving

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> I just sent you an email. I also know...
  12. Thread: Leaving

    by Kristen
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    Leaving

    I just sent you an email.

    I also know someone who was kicked off this board for sharing a information about a facebook group for people with CF. Ridiculous.

    :::wondering how long it will take...
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    chances of getting pregnant

    I am very healthy CF-wise (FEV1 115%, PS, healthy weight, etc) and I have not been able to get pregnant on my own. But, IUI has worked wonderfully for me. I've gotten pregnant 3 of the 3 times I done...
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    Moving to a new climate...?

    I grew up in Maine and went to college in upstate New York. My FEV1 was always around 120%, until I moved to Texas for graduate school. It immediately dropped to 100%, I developed sinus issues for...
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    Rash from Bactrim??

    I am allergic to Sulfa and got a rash when I took Bactrim. My rash was more of a large, uniform rash that was like little dots. I also got a low grade fever.

    However, you may just get a different...
  16. Anyone ever been on advair then changed to flovent the next day?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>carly23</b></i> So you just take the serevent right after the flovent. <img src=""></end quote>
    Yup. I believe my doctor has me on the...
  17. Anyone ever been on advair then changed to flovent the next day?

    I have switched that quickly.

    Flovent does not include a bronchodialter, it is just a steroid. I take Serevent in addition to Flovent so that I get both the bronchodialter and the steroid. But, I...
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    Know of anyone with more than 2 kids?

    Nikole, my understanding is that you and your husband each carries one CF mutation. One of you carries dF508 and the other carries 711+1G>T. In order for your 3rd daughter to have another, unknown...
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    New Wearable Airway Clearance Device

    LOL. I love how they mention shipping is included. Because I can afford $10,000 but definitely not $10,000 + shipping <img src="i/expressions/face-icon-small-tongue.gif" border="0">

    Isn't that...
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    New Wearable Airway Clearance Device

    Wow, that would be awesome. I'm also curious about the cost.
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    IV antibiotics periodically or as needed?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luv2run</b></i> What about Tobi? I've never been on IV antibiotics for cf...just cipro when I have a cold (virus, flu, etc )that won't go...
  22. Thread: Advair

    by Kristen
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    Advair

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> isn't advair in the form of an inhaler now too?</end quote>
    I did not know this and am surprised my doctor never...
  23. Thread: Advair

    by Kristen
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    2,420

    Advair

    I've used it in the past and it helped my breathing, but it aways gave me thrush, despite rinsing my mouth afterwards. Now I take either Symbicort or Flovent + Serevent and I don't have the problem...
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    Saline Rinse...w/out saline

    LOL, ouch. I have done something similar. I use a Sinupulse to rinse my sinuses, and I'm supposed to run vinegar + water through it every few weeks to clean out the salt. Well, TWICE I have forgotten...
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    Daughter has cultured Staph. A

    I'm pretty sure that the normal population does not culture Staph, because, if I culture Staph, my culture results read "Staph." But if I don't culture it (or PA), my culture results read "Normal...
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