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    opening up

    I am the mom of a son with cf who is now 33, as a teenager he played all sports, and his friends knew he had cf but it wasnt a factor. He did his meds mostly all the time, and when he didnt he felt awful so it wasnt worth missing a treatment. CF is just a part of him, he use to tell people I...
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    My 7 years daughter is recently diagnosed to have CF

    Kenna2 I was reading your response and had to laugh as you were dxed same age as my son and he is now 33. I agree totally with everything you suggested, actually the post sounded like I wrote it. Have a wonderful night
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    Looking for people in Florida

    Welcome, I dont know what your protocol is for cf patients meeting face to face but here it is recommended that CF patients not be closer than 6 ft apart. I would double that personally and they should wear masks so as not to contaminate each other with germs and cf bugs. I hope you find someone...
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    Should I request a new sweat test?

    Yes I would have your son retested. My son was first misdiagnosed then retested and was positive. His pediatrician did the first test locally but I wasnt convinced and went to Childrens hospital and he was diagnosed from there, we were then sent to cf center. My son is 33 and doing well, has...
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    Repeat sweat tests, crms, and one scared mom

    We all understand your worry and that's natural and normal but not exposing your child to life is worse then any virus. I am not saying that to be flippant, I just mean he needs to live his life with CF. My son has done all the things he wasn't suppose to do and not always with my agreeing with...
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    2 teen siblings diagnosed

    Welcome to this group, you have found a great group who b is always willing to share. My son is 33 and doing well, he was died at 7 and just started Kalydeco three months ago as his gene was not approved for it. It will keep your girls healthy. Keep them exercising. DON'T READ old literature on...
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    Anybody a patient at USC CF Center in Los Angeles?

    Is this Lilly from Elpaso, I spoke to you many many years ago, I live in Ohio but lived in Elpaso in 2003 and 2004. My son Andrew who is now 33 moved to LA 9 years ago and goes to USC Keck medical cf center. They are wonderful, his doctor is Dr. Rao. If you have any questions I can have Andrew...
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    Got new lungs

    Congratulations, wishing you a speedy recovery and much renewed health
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    Is it ok

    Katka, please relax and don't get over stressed. Sounds like he doesn't have cf. I would wait until he was a bit older and maybe have him retested. Our son who is now 32 was very very salty, when he slept, he would sweat alot, so much so that his bedding would have the white salt rings where...
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    Sauna and CF

    I would think with headache you are definitely dehydrated. Be careful.
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    My Alex

    Deepest condolences on your loss. People in the hurricane areas are collecting CF supplies and medications. Maybe contact a cf center in Houston and they could put you in contact with someone. Hugs
  12. G

    Two Years Ago

    This is beautifully written, I can feel your hope and heartache. My sons mutation was just approved for KALYDECO,we are awaiting on insurance approval. Though it doesn't look promising, at least we know there is hope and with hope we can continue on this journey. One day hopefully the cost of...