Cystic Fibrosis Forum (EXP)

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    Sinus Flare Ups and Sushi

    Anyone see a positive effect from eating sushi/wasabi during a sinus flare up? I had some this morning and as anyone might know who's had wasabi/soy sauce mix, is that it clears your sinus immediately. Just thought I'd mention this for anyone else to try and see if it's a quick, temporary fix...
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    Who do you want as your next US president?

    **I'm going to rephrase....... I'm interested to hear about other US views on who you're thinking of voting for. Who and why? Who do you think will have the best healthcare policy? What is your main issue of concern? Obviously there are so many major issues at stake, so I'd like to hear...
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    Did you find out through your medical records?

    Has anyone found out more about their health status from reading it in your medical records? If so, did it surprise you that your doctor didn't tell you himself or was it okay with you? I'm a little upset. I had a ct done of my chest a few months back and read just yesterday in my medical...
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    Insured People in CALIFORNIA

    Just wanting to take roll call of those who live in California, have GHPP and that are married. I have a few questions for you. 1. Is GHPP your primary insurance provider? 2. If you use GHPP as secondary coverage, who is your primary carrier? 3. Does GHPP cover all left over bills after...
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    Video Joke Box

    What Does Mama Say? <a target=_blank class=ftalternatingbarlinklarge href="http://www.jibjab.com/view/210114 ">http://www.jibjab.com/view/210114 </a> This Land! <a target=_blank class=ftalternatingbarlinklarge href="http://www.jibjab.com/originals/this_land...
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    Cool CF T-Shirts!

    Hello All, Just wanted to bring up Quoof's Cool CF T-Shirts again. As we all know, he had a successful transplant a few weeks ago, which is the best news! He's back in his hotel room now, close to the hospital and recovering with some minor issues. Go Q! The T-Shirts were created to try and...
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    Who has been to NJM Center?

    Anyone been to the National Jewish Medical Center in Denver, CO for mycobacteria treatment or for a consult? Just curious what to expect. I've been asked to come for 10 days (minimum) for my first visit. At first they said 2 days should be fine since I've had so many key tests done already, but...
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    Fire Evacuations

    We evacuated yesterday from the Malibu fires. Now there are up to 13 different major fires throughout southern california, and 40,000 acres burned. I know there are a lot of us from this site throughout SoCal (and now northern CA too) and might be dealing with other evacuations. How is...
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    Sign Q's GUESTBOOK

    ************************** Quoof has a Guestbook on his site that has just been made live. Please take a moment to sign it. I know when he gets up and running around again, he will be so thankful to see your best wishes on his site too, as well as here of course! His Site: <a target=_blank...
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    Experience with ITS Pharmacy?

    Has anyone used ITS Pharmacy (in CA) for TOBI and their eflow? They're the ones where if you order your TOBI from them, they'll give you an eflow for free. Is it a good experience working with them? Do you receive your meds on time? Is it the latest eflow model, the battery operated one...
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    What Does Fighting CF Mean To You?

    I'm curious, what does 'Fighting CF" mean to you? When someone tells you, "Keep fighting!", and you think to yourself, Oh yes, I am fighting the good fight, or I will always fight..... what are some of those ways you're fighting? Is it that you get up everyday and do your treatments, is it...
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    Question to others with Mycobacterias

    I have mycobacteria avium complex and have been treating it for about 1 year now. My last culture showed that it is definitely still there and lurking, which I was hoping it would have started to thin out and not show up in the cultures after so much treatment. I was recently hospitalized for...
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    Getting O2 during exericse...

    I'm trying to figure out if I need O2 when I'm exercising. I'm asking for it, b/c I have a little pulse ox machine at home and it says I go to 90% when I exert myself. I don't totally trust this gadget though and am concerned I might go lower then 90%. So I'm asking for an exercise desaturation...
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    Lung Question?

    Hello, I asked to see my xrays this week since I haven't seen them for about 12 years. A pulmonary fellow just explained to me that they show my lungs are "filled with air" and b/c of that they are "larger than normal". He also pointed out that this is no change from my xrays one year ago. He...
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    Anyone get that metalic feeling?

    I've gotten this metalic feeling that runs throughout my body, like my blood stream or something that always creeps me out. The first time I ever felt something like this was during a serious kidney failure where my legs felt like 1,000 lb weights and I just felt metalic all over. That was...
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    Stats - are they okay?

    I've been feeling unsure lately about whether my #s are okay for 'pushing' my work outs. Basically I'm just starting up again (so not entirely pushing anything yet) and am at the point where my lungs get tired before my legs. So I've been wondering if my heart rate and O2 are okay while I'm...
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    Major Muscle Loss

    Just wondering if anyone has experienced major muscle loss in a short period of time, other then being really sick and lying in bed for long periods of time. I've been much less active over the past year so that could be the culprit, but I'm also wondering whether there are any medication combos...
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    Are you more susceptible when....

    This might seem very basic, but I am wondering what the relationship between lower lung function and higher susceptibility rates to bacteria (bugs). The water parks thread make me question this. For me, growing up I did tons of activities in any form and never worried about what kind of water I...
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    What have you learned?

    I thought it would be fun to see what all everyone has learned from this site, and I know for me I have a looooong list of things. As we all know, among other things, this is a place to learn. I'll start. <b>What I've learned from coming to this site: 1</b>. The importance of GSH...
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    OT - Does anyone here do grant writing?

    Does anyone here do grant writing? Or would you be able to advice on the subject? I'm curious. Thanks for any responses!
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