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  1. R

    Kalydeco non G551D users

    What insurance company do you have. What did you need to show them to approve it?
  2. R

    G-tube

    You can also try a NG tube - placed via nasal canal.
  3. R

    Do scientists know when there is gonna be a cure? Is 1/2 the cure out?

    17 years ago when I was doing a clinical trial for PBA, with baited breath that this was a "cure" thinking it was right around the corner. One of teh researchers mentioned that if this drug they were testing worked it would only take another 7 years for it to come out. Really I was devastated I...
  4. R

    Kale chips

    Yeah they are one of my new favorite things and lots of vitamin a and k
  5. R

    G-tube

    Recently I had a tune up at the hospital and I notice what is on the food trays of some of the other patients. Junk, Coke, jello, mac and cheese - this is a problem. There is no way to get healthy eating from a vending machine. I have been using the G-Tube for over 20 years and only the last...
  6. R

    G-tube

    I have been re inspired recently to really embrace my G-Tube and not for the obvious reasons. This is a long post so I will split in two. G-Tube Advantage "Let food be your medicine and Medicine be your food" Hippocrates
  7. R

    G-tube

    Hi Janelle: Yeah a G-tube is essential. Getting nutrition is imperative. Leaving it up to the whims of when we need to eat is impossible. I have several posts on g-tube and nutrition. let me see what I can find and repost. Gluten Free is the way to be. If you are trying to be healthy and live...
  8. R

    Got my Xoponex Free?!..wasnt expecting that!

    If anyone needs Saline 7% or Zenpep got a few extra boxes/bottles for donation! FYI
  9. R

    Gluten Free is the way to be healthier!

    yeah there is no silver bullet for everything. GF is only one part of it, it is hard and takes time. If there is damage in the intestines there is a high likelyhood of other food allergies due to the "tight junctions" being loose and other proteins get in there and wreak havoc. I went DF too...
  10. R

    HELP! My 10yr old is refusing to do airway clearance

    Yeah running and playing is going to help. Swimming and such is good for us!
  11. R

    Gluten Free is the way to be healthier!

    Gluten Free is the way to be. If you are trying to be healthy and live with CF you have to take a very aggressive approach to your health. We do not want to do anyting difficult and we all want the silver bullet, but we need a strong foundation to be able to fight this disease: Gluten, dairy and...
  12. R

    Anyone gluten intolerant as well as CF?

    The globe-spanning presence of wheat and its exalted status among secular and sacred institutions alike differentiates this food from all others presently enjoyed by humans. Yet the unparalleled rise of wheat as the very catalyst for the emergence of ancient civilization has not occurred without...
  13. R

    Anyone gluten intolerant as well as CF?

    Hi Karen: You are on the right path. Most CF's are gluten intolerant its just 98% do not know it. I am GF and it has made all the difference in my health, just wen I went GF 30 years ago. here are some of my other posts...
  14. R

    Anyone gluten intolerant as well as CF?

    Look at this article www.greenmedinfo.com "The Dark Side of Wheat" With CF there is no short cut to health, we have to take a hard look at what we have in stock what is working and where we can optimize our health. We have to work harder and smarter. We have to do what our CF docs say and we...
  15. R

    how tall are you?how much do you weigh?

    It seems that there are some tall CF's. Do you think the younger people are taller on average.
  16. R

    how tall are you?how much do you weigh?

    It seems that there are some tall CF's. Do you think the younger people are taller on average.
  17. R

    how tall are you?how much do you weigh?

    I am 40 , male, 5' 7" and 3/4' - wt 145 - 150lbs
  18. R

    how tall are you?how much do you weigh?

    I am 40 , male, 5' 7" and 3/4' - wt 145 - 150lbs
  19. R

    Dental problems caused by cf?

    I have a messed up front tooth. I broke it doing a neb (for real). It had to be removed and needs an impant. The first implant did not take due to low bone density and lack of growth. This is due to CFRD and osteopenia I would think. So waiting for a bone graft and a second implant. I have had...
  20. R

    Dental problems caused by cf?

    I have a messed up front tooth. I broke it doing a neb (for real). It had to be removed and needs an impant. The first implant did not take due to low bone density and lack of growth. This is due to CFRD and osteopenia I would think. So waiting for a bone graft and a second implant. I have had...
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