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    Help!-Medicaid Managed Care Plan?

    To those who live in Florida, what Managed Medical Assistance (MMA) plan did you choose, and why? I've been having a difficult time deciding between Prestige and United Healthcare. I live in Orlando, but my CF doctor is located in West Palm Beach. Any suggestions or pearls of wisdom that you can...
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    Who wants to blow CF away?

    I haven't posted in awhile, but I wanted to share my new Great Strides video with you all. Please consider making a donation to help find a cure by going to: http://www.cff.org/Great_Strides/JenJones Thank you and breathe easy. ♥
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    20 Weeks Pregnant and found out baby has DDF508 CF - What to expect, and what to do?

    Hi Doug. I am 27 years old with Cystic Fibrosis. I have one delta f508 mutation and a W1282X mutation. I too, had an obstructed bowl when I was born, also known as a meconium ilieus. I was two months premature, weighing 4 pounds and rushed immediately to surgery. I spent the first 73 days of my...
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    What do you say to your child when he says he wishes he were normal?

    I find it better to be a "one of a kind" type of person than a "normal" person. I would tell children that they were born to stand out and shine. I remember when I was a little girl, I had to have my enzymes broken into applesauce by my teacher whenever I would eat. At that time, I had not...
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    Experience with IV antibiotic Meropenem

    I used to be able to take Meropenem and Imepenem, but now the intravenous antibiotics cause increased heart rate, difficulty breathing, and extreme fatigue. I get the same reaction as musclemania. I have an allergy to both meds now. I've also developed an allergy to chloroprep and tegaderm dressing.
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    Yoga?

    I recently started taking Yoga classes and I feel amazing afterwards. I have noticed that the positions are great for postural drainage and I've noticed a positive difference in the way I have been breathing. I am looking forward to my doctors appointment this Friday, I'm hoping that I'll see my...
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    lung function

    I'm 27 years old and my FEV1 is 46%.
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    Any Good CF Doctors in Florida?

    Seriously, thank you for all of your input and feedback. I'm amazed by the love and support everyone on this CF forum brings. Your suggestions and advice will help me to find the right answer as well as which path to take. I plan on looking into your suggestions. Thanks. <img...
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    Any Good CF Doctors in Florida?

    Seriously, thank you for all of your input and feedback. I'm amazed by the love and support everyone on this CF forum brings. Your suggestions and advice will help me to find the right answer as well as which path to take. I plan on looking into your suggestions. Thanks. <img...
  10. V

    Any Good CF Doctors in Florida?

    I really appreciate everyone's input. In the CF community I've heard tons of CF patients leaving the Central Florida Pulmonary groups care and going to either Shands or Miami for CF care. @entrophy- I haven't seen Dr. Calimano before, but while seeing Dr. Layish in Orlando I did not like how...
  11. V

    Any Good CF Doctors in Florida?

    I really appreciate everyone's input. In the CF community I've heard tons of CF patients leaving the Central Florida Pulmonary groups care and going to either Shands or Miami for CF care. @entrophy- I haven't seen Dr. Calimano before, but while seeing Dr. Layish in Orlando I did not like how...
  12. V

    Any Good CF Doctors in Florida?

    I am 27 with Cystic Fibrosis and I'm curious to hear your recommendations and warnings about your Adult Cystic Fibrosis doctors in Florida. I currently live in the central Florida area and am looking into the possibility of upgrading to a better Adult CF doctor. Thanks for your input. <img...
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    Any Good CF Doctors in Florida?

    I am 27 with Cystic Fibrosis and I'm curious to hear your recommendations and warnings about your Adult Cystic Fibrosis doctors in Florida. I currently live in the central Florida area and am looking into the possibility of upgrading to a better Adult CF doctor. Thanks for your input. <img...
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    salt treatments

    I'm 27 with Cystic Fibrosis and there is a Salt Room located in Orlando, Florida that I go to. I just started going this week because I signed up to see if going three times a week can help improve lung function in Cystic Fibrosis patients. My FEV1 is 46% and at the end of 3 weeks I will do...
  15. V

    salt treatments

    I'm 27 with Cystic Fibrosis and there is a Salt Room located in Orlando, Florida that I go to. I just started going this week because I signed up to see if going three times a week can help improve lung function in Cystic Fibrosis patients. My FEV1 is 46% and at the end of 3 weeks I will do...
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    Any PTC124 (atalurens) out there?

    Hey missT! I've been in the PTC124 (ataluren) clinical trial for a good 9 months now. Like you, I was super excited when I found out that I could partake in this trial and still am optimistic that a cure is just around the corner. I have participated in 6 clinical trials throughout my life and...
  17. V

    Any PTC124 (atalurens) out there?

    Hey missT! I've been in the PTC124 (ataluren) clinical trial for a good 9 months now. Like you, I was super excited when I found out that I could partake in this trial and still am optimistic that a cure is just around the corner. I have participated in 6 clinical trials throughout my life and...
  18. V

    Any PTC124 (atalurens) out there?

    Hey missT! I've been in the PTC124 (ataluren) clinical trial for a good 9 months now. Like you, I was super excited when I found out that I could partake in this trial and still am optimistic that a cure is just around the corner. I have participated in 6 clinical trials throughout my life and...
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    Mirena Birth Control for Cysters?

    Thank you guys so much for your feedback. It turns out that my OBGYN recommended doing a hysteroscopy before we changed my birth control. A hysteroscopy is where a camera goes up to see if there are any polyps or fibroids causing abnormal bleeding to occur. It turned out that I had a polyp in my...
  20. V

    Mirena Birth Control for Cysters?

    Thank you guys so much for your feedback. It turns out that my OBGYN recommended doing a hysteroscopy before we changed my birth control. A hysteroscopy is where a camera goes up to see if there are any polyps or fibroids causing abnormal bleeding to occur. It turned out that I had a polyp in my...
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