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  1. J

    Adults and older CF patients regarding the CF centers and getting diagnoised.

    usually they will do a sweat test first as that tends to be seen as the "gold standard" for diagnosis. This can be frustrating for those being tested, however, because as you will come to find out there are a fair amount of people on this board that had negative or borderline sweat tests but...
  2. J

    Adults and older CF patients regarding the CF centers and getting diagnoised.

    Hi Max, It would definitely be worth pushing for full genetic testing since you had a positive sweat test. I would talk to the doctor you saw at the CF clinic and find out why (s)he thinks you don't have CF. Dismissing it simply because of age isn't reasonable and you should fight that. If they...
  3. J

    Work / Life / Health Balance - HOW DO I?

    maybe add some more physical activity into your weekend plans. if you're an adrenaline junkie seek out some more physically demanding activities or take up running, hiking, rock climbing, biking, etc. to get in some more exercise. also not sure if you're supposed to be doing any form of airway...
  4. J

    Have an idea for a new CF product?

    Hi Amy, You may want to check out this thread that was just started a few days ago about the exact same thing. Lots of ideas there. http://forum.cysticfibrosis.com/threads/111832-Ideas-for-new-cf-product-development
  5. J

    blood

    Have you been to the doctor recently? Do they know this has been happening so frequently for 6 months?
  6. J

    inhaler vs. neb albuterol with HTS

    yeah I have an appointment next week so i think i'll ask for the nebbed version to give it a try. thanks yall!
  7. J

    inhaler vs. neb albuterol with HTS

    I have a love hate relationship with HTS. It helps me SO much but it makes my airways feel so tight. I always do my albuterol inhaler before starting the HTS and vest but I don't notice a significant difference between doing the inhaler and not doing it prior to HTS--my airways always feel...
  8. J

    Ideas for new cf product development?

    color coded nebs would be great!
  9. J

    How do you explain a tune up to your manager?

    If i knew there was a strong possibility that I would be admitted I always gave my managers a heads up (they knew about CF and were so supportive much like your manager). That way they could be prepared in whatever capacity they needed to be for my absence (I was usually out of work for the...
  10. J

    How do you know you need a tune up?

    I'm not a parent but it was always a combination of how I was feeling along with PFT, X-ray, and sputum culture results under the "how I feel" category was not only what I was able to articulate to my parents and doctor but if my mom noticed a decrease in exercise tolerance, appetite, sleep...
  11. J

    Heat Rash? (variant, mild CF)

    are you on any antibiotics? sometimes those can cause rashes with sun exposure.
  12. J

    Ok, I have Cystic fibrosis

    While I'm not glad you have CF, I am so glad you finally have a definitive answer! Sounds like you are on the right track with the question gathering and I'm positive with starting treatments you'll start to gain better control over the symptoms you've been experiencing. Keep us posted :)
  13. J

    Anyone allergic to Levaquin still able to take Cipro?

    i have terrible joint pain in most of my joints along with horrible nightmares from Levaquin and now refuse to take it. Never had any issues with Cipro at all.
  14. J

    How to explain CF to your coworkers...or do you?

    I think what Aboveallislove is great. I've never told my coworkers immediately but I can only hide/minimize the cough for so long. They, along with my bosses, have always been so kind and understanding and even been worried for me when someone else came in sick. The reaction can certainly vary...
  15. J

    financial help from government or national Health

    Hi Jaki, Where are you located? government assistance can vary from state to state or country to country. What CF clinic do you go to? There should be a social worker there that can help you with this type of information and be able to give you specifics for your state/country.
  16. J

    Thanks to all the advice, getting gene testing

    I'm glad to hear this meech! I hope you're able to find some answers through this testing. Let us know...
  17. J

    what do you think this is?

    the red, itchy spots sounds like hives. do you have a gluten/wheat allergy or intolerance? my best friend has a similar reaction to what you're describing (minus fever, but feels crappy) when she eats gluten or drinks beverages that contain it. it is possible, though to my understanding pretty...
  18. J

    First Time Getting a Port - Looking for Info

    sorry for the late reply...been on vacation with minimal internet access :) My port has a rubber center that i stick the needle into and it holds it in there pretty tight so I think it's extremely unlikely you'll be able to pop it out unintentionally. here is a link with a picture showing the...
  19. J

    First Time Getting a Port - Looking for Info

    Hi Hail, I usually switch out movements like wall ball shots for regular squats and cleans (olympic lifting style cleans) for something else. These are more just for my peace of mind and i think you could still do everything you normally do with the port accessed. You'll know if something feels...
  20. J

    First Time Getting a Port - Looking for Info

    I've had my port for almost 7 years and love it. Never had a Hickman catheter but regular picc lines became a nightmare for me after years of them so I had to go to a port. I was admitted for pneumonia at the time I had my port put in so i was feeling pretty crappy for a while after so i can't...
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