Cystic Fibrosis Forum (EXP)

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    got AIM/AOL?

    Same here. I'm always around to talk to. My IM is the same as this name. AbsintheSorrow.
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    MedPulse vest system?

    I personally hated the Vest. It took a while for insurance to cover it, and then the company came in and taught me how to use it and all good stuff like that. The company was very good and helpful, but insurance, as per usual, was a pain in the ass. And I hated it. It's a personal thing, some...
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    Where are we all from?

    I'm from Connecticut, but I go to school in Boston (only 3 more weeks until summer!). My name is Emily, and I have one Delta F508, and one gene from my father, than when we were tested didn't even have a name yet. Don't know if it does now.
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    What Mutations do you have?

    I have one Delta F508. I had bloodwork to test for my family when I was 5 or 6 (because my sister doesn't even carry the gene).. And because the gene my father gave me was so abnormal, they didn't even have a name for it. They might by now, but I don't know what it is. We just call him the...
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    Questions about the sweat test

    I don't know much about the borderline sweat tests, mine was conclusive. However, you really need to do something about this. First of all, fissures are a very painful bitch, and the faster you get this taken care of, the less she may have trouble with them in the future. As a parent of a "sick"...
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    Cats and CF?

    I don't have allergy problems, so I can't say as far as that goes... Because if there are allergies, I would say cats could be a problem. But I've grown up my entire life surrounded by pets. At all times we've had a cat or two and 3-5 dogs. All of which were hairy. Our favorite breed of dog is...
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    Cf or not that is the question ?

    Yes, that is what Pulmozyme does. I've been on it since it very first came out. 11 years or so. Its purpose is to loosen up the crap to try and cough it up. I also will be a quick advocate, and say Pulmozyme (though it's another med and can get in the way), is lovely. It makes me feel much...
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    Hi from England

    Why helloooooo Mr. Redhat. Home for me is Connecticut. I go to school in Boston, Massachusetts.
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    Teens

    First of all, encourage sports, but don't push them, because she will come to a point where she won't be able to keep up with the running and whatever else have you. Second, all of us get bitter sometimes. But for the most part, we're okay. I have my moments, not where I feel like the world is...
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    Home IVs

    He absolutely doesn't need to miss the whole 2 weeks of school. If he's not feeling up to it, sure he can stay home. But if he's feeling better, or able to go to school, there is no problem with him taking them with him. I would notify the school nurse, and (unless he knows how to do it himself)...
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    I need someone to talk to,in my age group.

    I will say this one more time, for people who missed it. *ahem* Whether you like to believe it or not, there are shallow enough people out there who will not be interested, or leave, because one is ill. I know people don't like to believe this, but it happens. I agree he might need to tone it...
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    Explaining Enzymes

    I don't even remember being taught about what CF was doing to me, because my parents never lied or hid anything. I have known all the yummy tidbits since before I can remember. Obviously you need to take it a little at a time, and like Debbie (I think it was) said, it may be hard to tell your...
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    What to eat to gain weight

    Well let me give you a tip... I went on anti-depressants, Depakote (a mood stabilizer) and birth control and gained 50 lbs in a year. LOL. The Depakote was the best to help that, I gained 20 lbs in 3 weeks on that one alone. And that was after trying hard to gain weight my first 18 years. I lost...
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    Enzymes as an infant

    Yes! That reminds me. My parents fed me... some predigested thing when I was really young. Progesta-milk? Something like that. It worked like a charm and I guzzled the stuff down... but my parents still tell me about those days because the stuff was expensive, and it did indeed smell like - and...
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    I need someone to talk to,in my age group.

    PS--- Believe it or not, but some people are shallow enough to avoid CFers. I'm 20, and have been dating for what? 6 years? I've had guys interested... find out I'm sick, and then suddenly have some lame excuse to avoid me. There are good people who accept you too... but coming across people...
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    I need someone to talk to,in my age group.

    You're right, there is always someone worse off, but sometimes it's hard for people. No matter what some patients say, everyone gets sick and tired of it. And sometimes just needs to bitch about it. Plus he's 13, he's just starting to realize some girls will treat him differently because he's...
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    Enzymes as an infant

    Exactly the same as someone else said... I'm on Ultrase, and those, when you open them, are full of these little beads. When I was too little to swallow the pills, my mother would open the capsules and put the beads into applesauce, and I'd eat the applesauce before meals. My mom did it that way...
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    cf and infertility in men

    I don't actually know anything yet, as I am only 20. My boyfriend is most likely not sterile, he's healthy. But I had a hysterectomy 2 years ago, and myself cannot have children. I actually have a question for you. Where did you learn some agencies like to give CFers trouble when trying to...
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    Comments on Real World cast memeber.

    I like Frankie. I think smoking is disgusting, and though I can be rebellious, I never took part in smoking cigarettes. (Mind you I used to smoke pot at parties on occasion... though I stopped that over 2 years ago). I find it sad she smokes, but I still like her. She has some issues, but so...
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    Just an Introduction

    Hi hi Mark. I'm 20 with CF, my name is Emily. I just thought I'd say hi back. Especially because you never communicated much with CFers. I'm always around, and always willing to talk. Say hi anytime. IM: AbsintheSorrow, and Email: AbsintheSorrow@yahoo.com. Ta-ta. -Emily
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