Cystic Fibrosis Forum (EXP)

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  1. A

    Get your fluids!!!

    Both aren't really good for your health... but smoking is worse... as we can all imagine. Drinking is tolerable, as long as you're not a wino on the side of the street with a liquor bottle in a brown paper bag.
  2. A

    Wisdom from parents please!

    I'm no parent. I just wanted to say... unless something weird happens in the next few years, your son will culture pseudomonas at some time or another. The stuff is everywhere. It won't help to try and shelter him from touching stuff, and putting things in his mouth. Not more than any other...
  3. A

    Tatoos

    The place I use is really clean, they make little individual paint bowls, and don't double-dip directly into the paint bottles. The needles are sterilized and good stuff like that. So is that before transplant thing only because they're worried about people getting tattoos from dirty places?
  4. A

    Doea any of this sound familiar?

    Get sweat tests done at a CF center. A lot of people who think they know what they're doing... are imbeciles.
  5. A

    Chest Physical Therapy in Infant

    You're right, it's not an open debate, and some day the child will understand why you're doing it. But in the meantime, the child does not understand why you're doing it. The child just understands that you're hitting him/her and he/she doesn't see other children getting the same treatment. And...
  6. A

    Tatoos

    PS-- I do have a tattoo and have no trouble with it. And Maisy? I was just thinking about getting a second tattoo... my design idea... a red rose with "sixty five" beside it. Hehehe. Great minds think alike! <img src="i/expressions/rose.gif" border="0">
  7. A

    Falling asleep during TOBI

    I've done it with my Pulmozyme before. I solved the majority of that problem when I went on sleeping pills a few years ago. I now get to bed at 12 or 1 instead of 5 or 6. Maybe try looking into a solution for your sleeping problems? <img src="i/expressions/rose.gif" border="0">
  8. A

    Tatoos

    Watch me be a little uninformed for a minute here.... did you mean that your doctor wants you to get any tattoos before transplant, because it's not a good idea to afterwards? If so, do you know why?
  9. A

    Chest Physical Therapy in Infant

    Every kid hates it at some point or another. It's no fun being tied down to any kind of medicines or therapies, especially when you're a kid. I'm sure it took a lot to get me used to it too when I was little. Try TV or music, anything fun the kid can pay attention to while you're beating on him...
  10. A

    Curcumin tablets

    No no I know my personal doctors care. I've seen the same pulmonologist for 10 years now, and she's awesome. I mean the people in charge of researching and trying to find a cure that don't actually see patients.
  11. A

    Curcumin tablets

    I fully understand what you're saying. Doctors don't really care, they don't live with it. I just want to make sure you guys are aware that just because it's natural does NOT make it safe. They thought <i>natural</i> ephedra would be a GREAT way to lose weight... until it started killing people.
  12. A

    Wisdom from parents please!

    <b>Rock on Debbie!!!</b> I've cultured pseudomonas for years also. And though I haven't graduated... I just finished my freshman year at college on the Dean's List. <img src="i/expressions/face-icon-small-happy.gif" border="0">PS-- I'm just adding this moon because I really want to know what...
  13. A

    psueudomonas and swimming pools

    Okay, I've made this point before, but with this point I feel the need to make it again. I don't say this assuming everyone does it, but it sounds like some of you might be. So here goes. Let me start by asking a question... What good does it do to add maybe six months to your child's life by...
  14. A

    surgery for sinus polyps??

    It's really a good idea. I had nasal polyps removed when I was 5. I was scared because I was 5, but it's not a huge procedure. And I still have a little bit of inflammation, but I haven't had polyps again since then.
  15. A

    Skyleen's son Josh!!

    Thanks so much! Hehe. Mike's just my boyfriend for now, but we plan to stay together. I mean we're still young, so you never know, but as far as we're concerned, we're done looking for someone to be with. He knows all the crap he'll have to deal with, and he's ever-so-supportive. He helps me...
  16. A

    i have some questions

    I don't like being optimistic. But don't assume because of that one post that I'm a grouchy never-happy person. Not true. I'm realistic, but I have a pretty spiffy life. Just don't want you to think I'm some scowling teenager who always whines and complains. <img src="i/expressions/rose.gif"...
  17. A

    How Do I Get Through?

    Don't leave because of someone's one response. I think the message you left just came off kind of wrong. I am not offended by you, and I don't think most people are. It's just hard for us to hear about someone being stuck because their spouse is sick when we know we're going to be turning around...
  18. A

    Sweat

    Ever since I can remember, I've loved salt. I salt anything I eat to where if I'm in public, people stare. I don't give a damn, it tastes good! Anyhow, I've never needed salt tablets because I do salt everything I eat so much. So if you keep salting the kids' food, you'll probably be fine.
  19. A

    Skyleen's son Josh!!

    Here's a photo album webpage I have. The pics I sent are all on here, as well as others. http://absinthesorrow.fotopages.com/<img src="i/expressions/rose.gif" border="0">
  20. A

    Skyleen's son Josh!!

    I replied directly to your email. So it went to Hotmail. I just forwarded the email again, but if that doesn't work, let me know. I can link you to my photo album webpage. <img src="i/expressions/face-icon-small-happy.gif" border="0">
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