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  1. K

    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. There is also a head/cup called the Trio that people use for other meds, including Tobi. I...
  2. K

    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 therapy." I have never had one. I've gotten really sick twice and needed IVs (once when I was 12...
  3. K

    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 it's helping so many people though!</end quote> I think that is correct, but I also don't think...
  4. K

    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 been seen at an accredited CF center. Even they treated me similarly to the way you have been...
  5. K

    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 life expectancy! FEV1 is one type of measurement of lung function. Kalydeco is a new CF drug that...
  6. K

    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, but new treatments have helped with that. I had a CT scan done last year that showed some mild...
  7. K

    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 specialty pharmacy and I mark it on my calendar. As far as staying compliant, I am not 100%...
  8. K

    Sweat test result and menstrual cycle

    I have heard of a fertility detector that measures sweat levels: From that website: "The OV Watch Fertility Monitor keeps a tab on the Chlorine levels in her sweat and presents the same in a full fertility window."
  9. K

    The Best Exercise to Raise PFT scores

    Another vote for running!
  10. K

    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 is so salty!" Either my grandmother or my mom had heard that a salty tasting baby might mean CF...
  11. K


    <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 someone who was kicked off this board for sharing information about a facebook group for people with...
  12. K


    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 for this thread to be deleted:::
  13. K

    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 IUI+clomid (first was m/c, second was my daughter, and I'm 8 weeks pregnant after the third)...
  14. K

    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 the first time, and I cultured PA for the first time. After graduate school, I moved to Boston and...
  15. K

    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 allergic rash from mine. I would call your doctor.
  16. K

    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 bronchodialter because it helps the steroid work. Another option you may want to try is Symbicort -...
  17. K

    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 think it's the bronchodialter that can cause the heart issues and anxiety.
  18. K

    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 mutation, either you or your husband would ALSO have to carry that mutation, which you mean one of...
  19. K

    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 price in the same ballpark as the vest?
  20. K

    New Wearable Airway Clearance Device

    Wow, that would be awesome. I'm also curious about the cost.