Recent content by Sophiesmum

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    Four little letters.

    For anyone who has hidden under a rock for the last week, I'd like to draw your attention to this. http://blogs.channel4.com/snowblog/eureka-moment-offers-hope-cystic-fibrosis-cure/24757 For those of you who don't feel inclined to read it allow me to summarise. Jon Snow is a reporter for...
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    Hide and seek.

    You know how you can become comfortable with something being there whether you like it or not? That's sort of how I feel with some of Sophies lung invaders. I know that sounds utterly ridiculous and I kind of agree sort of, but let me explain. Sophie has grown Mr P (pseudomonas) since she...
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    colistin, what a pain in the butt

    Hi my daughter has used colistin for a good 7 years now and we pull down the seal and pop off the bung as already mentioned. I recommend you tap the vial before you add the saline to loosen the powder first. Then when you've added the amount prescribed, we swirl the vial around for about 15...
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    Annual Review

    We were a little late sorting Sophies annual review as I had to reschedule her appointment. All in all things are looking great! Height and weight are steadily increasing and her chest sounds good. Lung function left a little to the imagination because Sophie appears to have forgotten how to...
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    Kalydeco/lumacaftor for DDF508 results are in.

    vertex are currently trialling VX661 for people with one copy of DF508.
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    Kalydeco/lumacaftor for DDF508 results are in.

    http://investors.vrtx.com/releasedetail.cfm?ReleaseID=856185
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    Lung function.

    Well Sophie had her port flushed today and I'd asked her nurse if it would be possible to do a cheeky little lung function while we were there. She said sure, and then asked why... I then had to confess id stopped the hypertonic saline. I did have my reasons though! Soph developed a viral...
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    Clinic round up! (And a few questions)

    Hiya thanks for response! the issue we are having is it's causing some airway restriction and her lung function had dropped 30% for both, it's now 20% down so improving slowly. She has no audible wheeze but is quite breathy at times. currently having a bronchodilator prior to each dose which...
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    Clinic round up! (And a few questions)

    Clinic went well to be fair. Sophie is in great health at the minute so wasn't expecting anything to be too out of the ordinary. Weight sitting stable at 17.8kg Height up nearly a cm to 109.9cm And 100% sats. Sophie had already produced a sputum sample before we left home so I handed that...
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    Parallel universe

    Frustration, fear. Tears tumble down my cheeks. Uncertainty and driven into a world of experiences that freeze you to the core. Suffocating and choking on stats and risks. Holding onto a small amount of hope, hope of a future, any kind of future. I've spent a few hours reading through this...
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    A return of sorts

    Well after taking a little over a year off from blogging I feel it's time to make a return of sorts. I say of sorts because life is hectic. I can't promise to a set amount of blogs per week but I can promise insights and updates more frequently than they have been. For those that have checked...
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    Kalydeco and D1152h

    Hiya! thanks for your reply :) Yep I've been stalking your blog :D we are in the UK so can only get once it's been approved-big boo! I know there's a residual mutation trial ongoing currently and waiting on results I guess to see what happens! Sophies other mutation is DF508 so I'm wondering...
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    Kalydeco and D1152h

    Hi all! just wondered if anyone has managed to get kalydeco off label with this mutation? And if so what are your experiences? many thanks! Gemma x
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    A massive HELLO from us!

    It's that time of year for us, home IVs. So much to update. Full blog post coming soon.... x http://lungsbehavingbadly.blogspot.co.uk
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    MRSA Vs Vancomycin

    Visit here for main blog with all the pics!! http://lungsbehavingbadly.blogspot.co.uk/2013/02/mrsa-vs-vancomycin.html Very long overdue post, sorry! Well in my defence I have a reason why I have left it so long before writing this. Right lets zoom back to Sophie's 5 day admission for...
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