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    Leaving

    Firstly, I would like to say that interacting with all of you over the years has been the greatest pleasure. It has been incredibly fufilling to offer help and advice and also be the recipient of help and advice. Sadly, for very personal reasons, my time here has come to an end. I have no...
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    HTS ineffective

    http://www.nih.gov/news/health/may2012/nhlbi-21.htm I have a feeling this will be proven mostly true for adults too. I think it's a good sputum induction agent, but not the miracle it's being promoted as.
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    No more PA

    I just came back from my latest clinic visit. I no longer culture PA, this was confirmed by BAL on the 14th of April. How I got rid of it, I don't know. I do culture aspergillus and we are going to begin treating with voriconazole.
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    Anyone on Kalydeco seen changes in LFT's?

    I'm just curious if anyone has seen changes in their ALT or AST levels after being on the medication for awhile.
  5. H

    Insulin resistance

    So, I was just put on prednisone after the bronch I had yesterday. I always get really insulin resistant on steroids, but my hospital wants to check my BSG and base my sliding scale on my BSG before dinner (96mg/dl this time). That seems kind of stupid to me, as I know I will probably ecclipse...
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    TED talk: Singing after double lung transplant.

    I thought this was encouraging for those of you who have had transplants, or are considering them.<br><br>http://www.ted.com/talks/lang/en/charity_tilleman_dick_singing_after_a_double_lung_transplant.html<br>
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    Prevent mistakes and misdiagnoses

    Everybody is fallible, including doctors. I've had docs miss stuff that I have caught, or other docs have caught. I've also had docs suggest things that weren't in my best interest.<br><br>We have to remember that as far as medical science has come, it's not called a "practice" for nothing. I...
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    Can't see posts

    Why is it that I can't see all the posts on a thread?  This has happened to me several times.<br>
  9. H

    Amazing PFTs

    I don't like to brag about PFT's, since so many struggle to maintain theirs.  I am however very pleased with my latest results.<br><br>The point of my post is that I did not get there by vesting, nebbing, CPTing, or a ny other standard treatment.  I got there from exercise.<br><br>Don't get me...
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    Social Network for CFers

    I got an email from my clinic today with a new social networking site for people with CF.  It's a Facebook style network, which apparently just launched.  It looks promising, although there aren't many registered yet.  Check it out <A HREF="http://www.cffone.com">www.cffone.com</A>
  11. H

    P90X

    I am about to start this exercise regimen, is anyone doing this (I know Fit4CF does)?
  12. H

    CF Song Vlog

    After a bit of a delay, the vlog that was created for the upcoming CF song has been released. Hopefully this will begin to spur some interest in the project. Thanks for your continued support! <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=Mp-9iAoMD1Y...
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    CF Song Vlog

    After a bit of a delay, the vlog that was created for the upcoming CF song has been released. Hopefully this will begin to spur some interest in the project. Thanks for your continued support! <a target=_blank class=ftalternatingbarlinklarge...
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    CF Music Project Update 2

    Ok, a couple of updates today. I still have not received any voice mails. I would really love to add this personal touch to the song, which is really coming together well. I will re-post some of the questions to make it easier for you to think of something to say. State your name and answer...
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    CF song preview

    Ok, I lied. This is not the actual CF song. It's an example of the kinds of things we are doing in the studio as we have been bouncing around ideas. The video consists of screen shots of my Protools system and control surface. Please subscribe to our channel for updates and continue to check...
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    CF song preview

    Ok, I lied. This is not the actual CF song. It's an example of the kinds of things we are doing in the studio as we have been bouncing around ideas. The video consists of screen shots of my Protools system and control surface. Please subscribe to our channel for updates and continue to check...
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    CF song

    Many of you might remember that we plan on recording a song using the sounds of CF. We hope to start production now that the holidays are over, however I still need sound samples (coughing, nebs, inhalers, vest, pills and any other sounds you can think of) from the community so we can use them...
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    Sounds of CF Song

    As you may have read, we are planning on recording a song incorporating sounds that are familiar to us as CFers (nebs, chest PT, coughing, O2 etc.). We would like as much community contribution as possible, so if you would like to record some of the sounds of your daily CF life, please do so...
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    Pain

    Most of us with CF have some kind of pain frequently. Be it arthralgias, pleuritic pain, sinus pain or whatever. The CF docs really don't like Rx'ing pain medication. So what is one to do? Has anyone figured out a good solution? I have thought about a pain clinic, but that's another doctor...
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    Steroids and "cushingoid" appearance

    I've been on dexamethasone for months now(for ABPA)and am starting to taper off finally. Does anyone have any input from experience or otherwise on how long it takes for the cushing's syndrome like appearance to go away (moon face, fat redistribution etc.)after stopping the dex? I'm hoping...
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