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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...

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...

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...

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...

vertex are currently trialling VX661 for people with one copy of DF508.

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

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...

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...

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...

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...

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...

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...

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

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

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...

Hello all, long time no speak! Pop on over to main blog to see all the picures :) http://lungsbehavingbadly.blogspot.co.uk/2012/12/2013nearly.html Apologies for that. Life as usual got in the way. Sophie is continuing to eat, it's still all very new and incredibly strange to get used to...

I had huge hopes of posting daily blog updates during the whole of Sophie's inpatient tube wean, however lack of internet and signal put a stop to it. Frustrated doesn't even come close to describing my feelings about that. The reason I wanted to document the whole journey was to help others...

http://lungsbehavingbadly.blogspot.co.uk/2012/11/tube-wean-day-2-3.html?m=1 Sorry for the minor delay folks, Internet signal has been very challenging to say the least. It feels almost like we have been cut off from civilisation and I've never known it be this bad in hospital before :)...

We are entering a huge milestone. No one can be certain how this next set of events will unfold, but we have hope. Hope that a massive leap, a gentle push and lots of persuasion will leave Sophie looking back on a time in her life that will become a distant blur. Part of the past. Next...

Hi Marina I'm Gemma and I have a nearly 5 1/2 year old with CF. Thinking back to Sophies initial diagnosis I was heartbroken too. It's an awful lot to get your head around, the treatments, medicines, hospital appointments etc plus just looking after a baby seems way too much. For us, it has got...