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  1. V

    constant sinus drainage after lung transplant

    I use Pulmicort daily, and then an additional rinse every other day with Pulmozyme. The mucus production in the sinus will never "go away"; that's what CF does. Have you also tried Manuka honey? Check out http://www.honeydoc.org for details. The pre-packaged rinse bottles are a bit pricey...
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    In Need o Help Right Away

    For the record, it's the same in Canada. Once on any type of social assistance programme, federal or provincial, it's nearly impossible to get off, or get out of perpetual poverty. (and I'm supposed to feel sorry for refugees? Our own governments already ignore millions of us who are real...
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    Canadian Health Care System

    There is a huge misconception about Canada's health care system, and even most Canadians don't truly understand how it works, until they need to access services. That said, I will focus my comments on just how the Canadian system works for people with CF. Federal vs Provincial. The federal...
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    E rapid

    Healthcare is for profit business. Therefore, of course Altera can only be used with Cayston. We accept all credit and debit cards to purchase a new E-rapid each month you're not toking C. Note: before I stopped Tobi, my RT did caution to use only a half dose, because it becomes more potent...
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    Help with CFRD

    Rick: You may never *feel* better. I slowly developed CFrD and it went undiagnosed and untreated for nearly 10 years. The diagnosis was extremely stressful, and the clinic was in disarray and couldn't decide how to treat my CFrD. That first shot of insulin felt like a shot of opiate. I could...
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    Diagnosed with CFRD yesterday.

    If your insurance covers CGM, I highly recommend going with that; you will get a reading every 5 minutes! Far more accurate than just test strips and finger pricks every few hours. Please correct if I'm wrong: aren't glucose meters free with purchase of test strips? And 100 strips is ~ $60 -...
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    Diagnosed with CFRD yesterday.

    When I was diagnosed, I had two doctors telling me two different treatment plans. One was the pulmonary dr at clinic, the other was the endo at clinic. Sadly, they are also married. The entire experience of diagnosis and establishing treatment regime was so maddening, I once just walked out of...
  8. V

    Cf fund raisers- do you go??

    I have CF. I will not live in a bubble.
  9. V

    A-Venters Assemble: Age of Ultra-jerks

    The movie isn't school or work. Everyone chooses to go to a movie. If one does not want to be around others who are coughing, then stay home and bit torrent that latest flick. I agree wholeheartedly with guitarboy. You are right and justified. In any context, random strangers only reveal their...
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    I thought you were a smoker

    It is smokers who cough / sound like they have CF. Not the other way around. Prior to further pontification, consider this: for a brief time, even in my short life, smoking was (and in many places, currently is) socially acceptable. Being from a certain class of society, I too succumbed to...
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    Insulin Pump Users

    Have you tried different infusion sets? There are many different sets with different cannula lengths, angles, and materials. You should be able to get samples of several styles from your pharmacy / retailer. Best to try several and then decide to commit to a particular infusion set. I prefer...
  12. V

    sinus problems - did anything help?

    jbrandyn: How much pulmozyme do you put in a rinse? I've been using pulmicort, but was wanting to move away from steroids.
  13. V

    CFRD BS control

    First off: a carb is NOT a carb!!! Processed and/or refined sugars (found in most packaged or prepared "food") will hit your bg harder and faster than a natural sugar. The combination of protein and fiber with carbohydrate will reduce the effect of the carb while taking longer to metabolise...
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    Tobi Podhaler Denied

    Just to add, for all the Americans who may be thinking we've got it easy in Canada... our health-care is not "free", and I too deal with incompetent pharmacies/pharmacists and have constant issues with drug insurance, coverage, denials, etc.
  15. V

    "cfrd"

    The differences are the units. Everywhere except the USA uses mmol/L where the the USA uses mg / dL. Similarly, UK/Ireland use the unit of "stones" for body weight. 1 stone = 14 pounds = 6.35 kg. But more to the point: Angela, is your bolus : basal ratio approximately 1:1 ? Meaning, are your...
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    Exercise drink for someone with CFRD???

    http://tracebev.com/
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    Exercise drink for someone with CFRD???

    Trace Beverage. It's a "black water". Tastes like water but it's black. Full of minerals and electrolytes, but with zero carbs (yes! No sugars, no sweeteners!)
  18. V

    CFF 3.3 billion dollars

    I want a life TODAY with dignity and fully funded care, access to all treatments with worry-free access to the funding to pay for it TODAY. AFTER all CFers have funding and care, then do the R&D for tomorrow. CARE before cure.
  19. V

    Sinus question

    The "sad" part was that no one thought it was the CF.
  20. V

    Sinus question

    Sadly, when I was a child and my nose ran all the time, constantly dripping buckets of clear mucus which I would then snort and swallow, no one EVER thought to relate this to CF. Among other issues, I have been plagued with sinus problems my entire life. Had healtcare known in the 70's that my...
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