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Type: Posts; User: JENNYC

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  1. Replies
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    Abby struggled with this for years. I see that...

    Abby struggled with this for years. I see that your son is a DDF508. After Abby started taking Kalydeco...her sinus problems completely went away. Have you quizzed your dr about the thought of...
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    Sorry guys I've been so busy that I haven't...

    Sorry guys I've been so busy that I haven't checked back in! We received the final culture results and the only thing that she grew was the H-flu. They treated her with augmentin and prednisone in...
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    Sorry guys!! I was so busy at work when Jeanne...

    Sorry guys!! I was so busy at work when Jeanne was so sweet enough to upload these for me and then we went on vacation with my inlaws for their 50th wedding anniversary!! Crazy busy!! Anyhow I...
  4. I haven't logged in a while and just saw this. ...

    I haven't logged in a while and just saw this. Abby is not ddf508, so does my voice or experience with Abby help? I couldn't post pics on here of her last bronch that we just did but the results...
  5. If you will PM me your email address I will send...

    If you will PM me your email address I will send you a slide show about protein digestion put on by a couple of doctors who studied this. It is really good.
  6. Thread: Sinus question

    by JENNYC
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    I couldn't agree more Gammaw! :)

    I couldn't agree more Gammaw! :)
  7. I think I got everyone. Let me know if you...

    I think I got everyone. Let me know if you didn't get it. :)
  8. Sorry...yes. He suggested that maybe we should...

    Sorry...yes. He suggested that maybe we should provide a high protein snack 2 to 3 hours after meals, and give a few enzymes depending on how you normally take your enzymes for any fat intake that...
  9. Ok I think I have emailed everyone. Let me know...

    Ok I think I have emailed everyone. Let me know if I missed anyone :)
  10. I think I have sent it out to everyone. Let me...

    I think I have sent it out to everyone. Let me know if you didn't get it. :)
  11. I don't think this is showing up...so if anyone...

    I don't think this is showing up...so if anyone is interested I will be glad to email it. :)
  12. Just wanted to make sure you saw my response on...

    Just wanted to make sure you saw my response on the other one. :)
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    Hi ladybird! I don't have any medical...

    Hi ladybird! I don't have any medical journals..but I do have a 9 year old that has been taking Kalydeco for 2 years now with great success. My doctors are not really making calls about it but not...
  14. Excellent Presentation on Muscle Loss & CF - I think a must read

    Hey guys a little while ago we were blessed enough to be invited to a fantastic CF meeting with 2 very incredible Dr's. I wish I had the audio to go with this...but I did get this slide and if you...
  15. Thread: sinusitis?

    by JENNYC
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    Hi Leah! So glad you are feeling better! It was...

    Hi Leah! So glad you are feeling better! It was super crazy and scary! I know that they always did a CT on her and that's how they would let us know that she needed another surgery but not sure...
  16. Thread: sinusitis?

    by JENNYC
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    Leah..I would be worried if you are having...

    Leah..I would be worried if you are having problems with your eyes. If it continues I would go see an ENT that is familiar with CF. I don't want to scare you but Abby's polyps were actually pushing...
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    This is fantastic!! I carry around a HUGE binder...

    This is fantastic!! I carry around a HUGE binder with all this information. I love the thought of an app like this!!! Unfortunately I haven't updated my phone yet. I would love for you to add a...
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    Oh no!! We can handle it when the vest goes out...

    Oh no!! We can handle it when the vest goes out but not the nebulizer!! Hugs for all the frustration!! Ladies we went to a meeting with 2 A&M Doctors/Scientist that really shed a whole lot of new...
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    Hi Heather!! I pm'd you! :) Excited to meet...

    Hi Heather!! I pm'd you! :) Excited to meet you!!
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    I just read that you are in Texas. I wanted to...

    I just read that you are in Texas. I wanted to let you know that Texas Children's Hospital is amazing. They have state of the art equipment and caring doctors. And as far as CF goes we have been...
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    Bryan/College Station Texas Area

    Hi all!! There are several of us in and around Bryan-College Station that get together every now and again. If you live around this area and would like to get to know some CF moms and dads please...
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    Jeanne thank you so much!!!!!

    Jeanne thank you so much!!!!!
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    Cowardly Private Messages

    I received 2 spam emails here that were very inappropriate. Did anyone else receive these? It is totally disgusting that someone would come here and do this to this community. Just wondering if...
  24. Absolutely!!! There is the Cystic Fibrosis...

    Absolutely!!!
    There is the Cystic Fibrosis Patient Assistance Foundation. Web address is www.cfpaf.org and the phone # is 1-888-315-4154
    There is Genentech Access Solutions...
  25. I have lived here my whole life and we have BCBS...

    I have lived here my whole life and we have BCBS 20/80. They have covered all of Abby's care no problem. We go to Texas Children's and love it. We get co-pay assistance and hardly pay anything for...
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