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    URGENT NEED FOR ACTION:Help to expedite FDA review of Tezacaftor/Ivacaftor(VX-661)

    It will not allow me to share the link. When I try to share it, it says file not found.
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    URGENT NEED FOR ACTION:Help to expedite FDA review of Tezacaftor/Ivacaftor(VX-661)

    Can we post this to facebook to get others to send letters as well?
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    Orkambi and Rash?

    Yes. I also had a rash. It was on my face.
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    how tall are you?how much do you weigh?

    I am 44. I am 5' 10". I weigh 165.
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    Pancreatic Issues and Orkambi

    I am on 15,000 and they are pink.
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    Pancreatic Issues and Orkambi

    So I am having stomach issues since I started taking Orkambi. It seems that when I increase my dosage of zenpep these issues subside on their own. Yesterday, I asked my doctor if I could up my dosage of zenpep, currently 13 per meal, by 1 or 2 pills and was told that I could not. His response...
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    Open frontal sinus surgery

    Well it turns out that the Dr. decided to go through my nose and not my forehead. Been home for about a week. Getting better each day. I go tomorrow to see my ENT for the first time. He will clean everything out tomorrow. Hoping to feel even better after he does this. Thank you for the prayers.
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    Open frontal sinus surgery

    Thanks for the info cheerfulpuppies. I figured it would take a long time to heal. I teach math at the high school and college level so I am giving finals in my college classes today. I have a sub for the other classes the rest of the year. I am assuming that I won't be back at school until...
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    Open frontal sinus surgery

    Surgery is tomorrow. Please say a prayer for me.
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    Open frontal sinus surgery

    Found out on Wednesday that my surgery will last 3 hours. They are going to remove bone in my forehead and then drill out larger passageways so that the frontal sinuses will drain properly. He is also going to cut a hole in the sinus passages so that if one side stops up then when that side...
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    Open frontal sinus surgery

    Thanks believingjesus. Sure I will be looking for your message. It has been a while since I have logged in. That is why I have not messaged you sooner. I am getting a PICC tomorrow to prep my lungs for the surgery. I always end up with pneumonia after surgery. Praying that we get me on the right...
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    Open frontal sinus surgery

    Hey, I was wondering if anyone could shed a little more light on the recovery time after an open frontal sinus surgery? I am going to have this done next week and I just want to try to get as much info about what to expect before this happens. Any information would be appreciated. I was told...
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    Scholarships

    Received one of the Boomer Esiason Foundation Scholarships and I also received the Elizabeth Nash Foundation Scholarship.
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    First PICC line ever -- panicking

    I am a teacher. I will usually get an infection that requires a PICC about once a year. When I do, I just cover the picc with a sleeve of some sort and go about my daily routine. When it is time for me to do my IV, I take off the sleeve and start my IV. You should not have any problems unless...
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    Help with Sinuses. Recommendations needed to break up sinus junk!

    I too have really bad sinus issues. I have had 8 sinus surgeries and am expecting my 9th this spring. My doctor is suggesting that we do a more extensive surgery this time. He is wanting to go in at my forehead and cut part of my forehead facial bone out. Once removed he will then drill large...
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    How do you like your Vest?

    I crank it up on 20 (as high as it will go) and do 30 minutes twice a day!!
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    I'm 35!

    Happy Birthday!!!!!
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    Treatment B. Cepacia

    I also have B. Cepacia. I have had it for 26 years now. I am still in the stable category though. I have not had drops in weight. My resistance has increased but still able to fight infections with IV antibiotics. You can message me and we can talk more on facebook if you would like. Glad to...
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    Enzyme intake -- how many do you take with meals?

    I take 14 (15,000) zenpep with every meal. I am 42.
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