Search results

In various threads I've seen several refer to discontinuing Orkambi or dropping out of the study. I'm we could try to pull the info all together, with some of the surrounding factors to help CFers access things. So, if you discontinued or dropped out, could you respond and note: How long...

So, DS for a couple weeks kept clearing his throat but not really coughing more and not sick...then had a nasty coughing spell after exercising (and also I realized the house was horribly dusty). Dust, vacuumed, and upped his Xopenex to 3x a day, but that's it. Cough had gone away and after...

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=933178 For our friends across the ocean. Only a first step, I know, but Godspeed in getting the drugs soon.

I'm hoping our resident expert (Dot the darling!) can help with this but wanted to post instead of PM in case others have similar questions but also in case others have ideas based on their clinic's handling. DS has just figured out the spirometer and in prep for next week's quarterly I wanted...

So was at the hair salon (woops, typo, but now THATwould be nice!) and overhearing the ladies next to me chatting about one lady whose son just started football and they practice everyday and even though it's just up the block, the drop off and pick up just is constant and "oh, can't we just...

any comparator between optichamber and vortex?

Stupid question (again). How does chronic treatment with bronchial dialator's help those with CF? My understanding is it opens the airways. But what does it do for CF? I mean it doesn't think the mucus...and if there is no excerabation or shortness of breath, what is the way that it works...

In placing an order earlier I was chit chatting with the agent based on my .edu email address and he shared with me some info for scholarships, which I'm posting here too: The scholarship award information, criteria for the scholarship, application process, and deadline for submission are...

Proqr http://finance.yahoo.com/news/proqr-announces-proof-concept-nasal-110000137.html

What 50 psi compressor do you use/have you used? Pros/cons, etc?

Is finally available on line here: http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/Pulmonary-AllergyDrugsAdvisoryCommittee/UCM455654.pdf

If a spirometer is properly working (sincroniced or whatever its called/spelled), is it possible for it to wrongly record a too high number based on a child's improper technique? I can see a low number being wrong or not an accurate assessment because the technique is wrong, but is it possible...

What's the highest % of predicted FEV you've ever had?

DS is extremely picky but I've discovered I can expand his food acceptance with familiar foods that have something new...so I tried these which have pizza and cheese and bacon but also egg. It's super easy to cook and very delicious and now he's asking for scrambled eggs whereas before he would...

Just got back from McDonald's run and the car in front of me had a vanity plate....PRNTR with a picture of a growling bulldog...if I didn't know you were out east I would have waved fondly! ?

We use liquid but for various reasons I'm looking to switch and wanted to know thoughts on tablet versus effervescent pills so for Zantac? Anybody's kids use? Are they as effective? Thoughts?

So DS is 6 and until about 6 months ago, never had a bugger. What I'm trying to figure out is does this say anything about his CF sinus functioning...He hasn't seemed to have any sinus issues, but I want to make sure what to look for. He smells very easily; never complains of headaches; his...

As DH was playing with DS he said sweetly as he watched me sterilizing nebulizers, I wonder if there's a special place in heaven for nebulizers washers? DS piped up...in heaven you don't have to get shots or take any medicine. That's right my love...that's right...

Flu shots are available now. I discovered a couple years ago you can get one that covers 3 or 4 strains, but you need to ask for the 4-strain one. Probably a "marketing" gimmick, but figured the broader protection the better. The "Quadivalent vaccines protect against 4 strains of the flu...

DS loves pretend play. This morning while wrapping up some work stuff he came in and showed me "Caterpillar's medicine he got from Walgreen's so he doesn't cough when he runs." He had taken a toy, stuck it in an envelop and is stabling a "label" on the outside with various Caterpillaresque...