Cystic Fibrosis Forum (EXP)

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  1. J

    SSI & Beth Sufian!

    Teri - I believe she does all states, not sure though. Go to the CFF website and find the legal hotline...
  2. J

    SSI & Beth Sufian!

    Teri - I believe she does all states, not sure though. Go to the CFF website and find the legal hotline...
  3. J

    SSI & Beth Sufian!

    For those trying to get SSI, just call her. She took my case on June 17th. I applied for disability/ssi on the 23th of June. On the 19th my case had a decision!!! I know crazy. Now I don't know the decision b/c it had to go to quality review first (some random thing to keep SSI in check). But I...
  4. J

    SSI & Beth Sufian!

    For those trying to get SSI, just call her. She took my case on June 17th. I applied for disability/ssi on the 23th of June. On the 19th my case had a decision!!! I know crazy. Now I don't know the decision b/c it had to go to quality review first (some random thing to keep SSI in check). But I...
  5. J

    SSI & Beth Sufian!

    For those trying to get SSI, just call her. She took my case on June 17th. I applied for disability/ssi on the 23th of June. On the 19th my case had a decision!!! <br /> <br />I know crazy. Now I don't know the decision b/c it had to go to quality review first (some random thing to keep SSI in...
  6. J

    me update

    I have never had an issue with pari. I had my proneb for 7+ years.
  7. J

    me update

    I have never had an issue with pari. I had my proneb for 7+ years.
  8. J

    me update

    I have never had an issue with pari. I had my proneb for 7+ years.
  9. J

    Toddler may need g-tube

    Wow, whoever you talked to annoys me. First go to www.wholesomebabyfood.com or wholesometoddlerfood.com Next - avacado is a GREAT high fat food. Its wonderful mixed with yogart, banana, anything really. Next you should add butter, oil, infant cereal whatever to everything you can for extra...
  10. J

    Toddler may need g-tube

    Wow, whoever you talked to annoys me. First go to www.wholesomebabyfood.com or wholesometoddlerfood.com Next - avacado is a GREAT high fat food. Its wonderful mixed with yogart, banana, anything really. Next you should add butter, oil, infant cereal whatever to everything you can for extra...
  11. J

    Toddler may need g-tube

    Wow, whoever you talked to annoys me. <br /> <br />First go to www.wholesomebabyfood.com or wholesometoddlerfood.com <br /> <br />Next - avacado is a GREAT high fat food. Its wonderful mixed with yogart, banana, anything really. Next you should add butter, oil, infant cereal whatever to...
  12. J

    me update

    www.insidecf.blogspot.com I ended up getting my compressor. A PARI vios. It works GREAT and is a little quieter. Its a pretty blue color. My doctor said I needed to see a cardiologist and have a heart monitor thing done. My PFT's were 48% PRE treatment (and thats 5 days with no treatments)...
  13. J

    me update

    www.insidecf.blogspot.com I ended up getting my compressor. A PARI vios. It works GREAT and is a little quieter. Its a pretty blue color. My doctor said I needed to see a cardiologist and have a heart monitor thing done. My PFT's were 48% PRE treatment (and thats 5 days with no treatments)...
  14. J

    me update

    www.insidecf.blogspot.com <br /> <br />I ended up getting my compressor. A PARI vios. It works GREAT and is a little quieter. Its a pretty blue color. <br /> <br />My doctor said I needed to see a cardiologist and have a heart monitor thing done. <br /> <br />My PFT's were 48% PRE treatment...
  15. J

    Cardiac Issues

    does anyone know anything aboout how CF relates to cardiac issues? During my pregnancy I was checked often for heart issues and told they are common in CF. While I was making my PFT list and going through my medical records I noticed well over 50 notations of heart murmurs and abnormal rhythms...
  16. J

    Cardiac Issues

    does anyone know anything aboout how CF relates to cardiac issues? During my pregnancy I was checked often for heart issues and told they are common in CF. While I was making my PFT list and going through my medical records I noticed well over 50 notations of heart murmurs and abnormal rhythms...
  17. J

    Cardiac Issues

    does anyone know anything aboout how CF relates to cardiac issues? During my pregnancy I was checked often for heart issues and told they are common in CF. While I was making my PFT list and going through my medical records I noticed well over 50 notations of heart murmurs and abnormal rhythms...
  18. J

    updates on vx770 and 809

    I would love too know as well. I have g551d and can't wait!
  19. J

    updates on vx770 and 809

    I would love too know as well. I have g551d and can't wait!
  20. J

    updates on vx770 and 809

    I would love too know as well. I have g551d and can't wait!
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