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  1. Thread: I'm 36!

    by liveitup
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    2,197

    Happy Birthday Girl!!!

    Happy Birthday Girl!!!
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    So, I am 36 years old. I had not been on...

    So, I am 36 years old. I had not been on digestive enzymes since I was about 16 years old. My cf dr. just prescribed enzymes recently - after I started Orkambi. I am wondering if it is because of...
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    Getting fat on Orkambi

    Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi...
  4. Thread: Good news

    by liveitup
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    2,805

    Wonderful!!! Good luck :)

    Wonderful!!! Good luck :)
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    I'm sorry to hear that the Orkambi has been rough...

    I'm sorry to hear that the Orkambi has been rough for many of you. I started taking Orkambi on the 3rd of September. So far, I feel great! I'm definitely not as salty, and I don't even have a...
  6. Thread: Good news

    by liveitup
    Replies
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    2,048

    wonderful!!!! Best wishes!

    wonderful!!!! Best wishes!
  7. Replies
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    That is so frustrating Imported!!! I am going to...

    That is so frustrating Imported!!! I am going to be praying for YOU and that this DOES WORK for you!!! I am hoping and praying that it already is! Will be waiting for GOOD NEWS!!!
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    Thanks for your responses. The other thing I...

    Thanks for your responses. The other thing I notice (and still am noticing) my mucus (ewe - sorry!!!) feels like I just got finished my Hypertontic saline neb. it seems "super flowY" (I'm sure that...
  9. Thread: Good news

    by liveitup
    Replies
    8
    Views
    2,048

    That is awesome!!! Is this your first half? I...

    That is awesome!!! Is this your first half? I only ever ran one half marathon, and it was the best race of my life (1:38:01 - OH YEAH!!!)! I think I was 31 when I ran it. Training is going to...
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    Hi Everyone! I started Orkambi last night. ...

    Hi Everyone!

    I started Orkambi last night. I took my 3rd dose tonight. So far, just a little cough and maybe the tiniest chest tightness. When did the "Hell week" start for you all? I'm...
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    Congratulations!!!! Yes, EAT!!!! Breastfeeding...

    Congratulations!!!! Yes, EAT!!!! Breastfeeding really does take a toll, but it is so worth it :)
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    I grew up in PA, but I live in Delaware...

    I grew up in PA, but I live in Delaware now....Arizona in between :)
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    I'm sorry...Accredo is our specialty as well,...

    I'm sorry...Accredo is our specialty as well, hence the "nightmare." Good luck and let me know how it goes!
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    Thanks! I was trying to do the thumbs up...not...

    Thanks! I was trying to do the thumbs up...not down! I'm sure our insurance company will make us use our mail order specialty pharmacy. Working with them is always a nightmare!!!!
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    Pharmacy and Orkambi

    Where will we be able to have our Orkambi scripts filled? I haven't gotten mine yet. Will they be like Tobi and Pulmozyme where you can have them filled at any pharmacy (or specialty pharmacy), or...
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    Congratulations!!!! Beautiful pictures :).

    Congratulations!!!! Beautiful pictures :).
  17. Hi! I am a homeschool mom. I have 3 kids, 9,4...

    Hi! I am a homeschool mom. I have 3 kids, 9,4 and 1 year. I only homeschool the 9 year old, and the baby is home all day too. I have cf though - not my kids!
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    thank you! I actually feel really good today, so...

    thank you! I actually feel really good today, so I took my kids for a jog! It felt good - really good!
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    Thank you both for your encouragement!

    Thank you both for your encouragement!
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    1,759

    Hi Welschwitch! I just sent you a private...

    Hi Welschwitch! I just sent you a private message! Hope to hear back from you!
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    Also, OMGOSH, Welchwitch. I haven't slept...

    Also, OMGOSH, Welchwitch. I haven't slept through the night in over a year! I had insomnia my entire 3rd trimester. I think I know why now - My baby is 9 months old and still gets up 2 times every...
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    Thank you all so much for your replies. I was...

    Thank you all so much for your replies. I was asked about my pft's - they were about 108% until after I had my baby. They went down to 84% when I had my first pneumonia which was a couple months...
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    Hoping this isn't my new normal...

    Hi All - I've just turned 36. My first 35 + years were normal, very normal. I was an athlete, a mom, a college graduate, and a ton more....a fun person, etc. I had never had a bout of pneumonia or...
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    Sorry, I have Aetna for health insurance and...

    Sorry, I have Aetna for health insurance and express scripts for pharmacy.
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    I have Aetna too..it is a nightmare. I use...

    I have Aetna too..it is a nightmare. I use Accredo specialty pharmacy for my Tobi Pod. It was a process...letter from the dr, etc. I don't even know what number to give you - they always put the...
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