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Hey Stranger, Really standard consent form. I think you might be asking specifically about confidentiality? It says I cannot discuss the study in a public places, but can discuss with family/friends etc. Therefore, if/when I start the study I won't be able to talk about how I'm doing with the...

Hi Deb! I'm glad you we were able to do the study and had good results. I am very hopeful that I get in and that I will have good results as well!! You're right, so far the PFTs, oximetry, and fitbit are a little overwhelming and a there's bit of a learning curve. Like you said, I can see...

Hey Everyone! I know there were a few people interested, so I decided to start my own thread about my Denver experience. :) Sooo.... I made it to Denver on Tuesday to be screened for the Kalydeco trial. For those who don't know, it is the trial for residual function mutations. In order to...

Yep LL, it's the Kalydeco trial for residual function mutations at Denver National Jewish. Heading out to be screened for it in a few days. Fingers crossed!

Thanks!! I will you posted for sure!!

Sorry to bombard you, but also here is a thread you may find interesting. It's where a couple of our resident experts on this site tell about what Kalydeco may mean for those of us with S945L. I linked it to page 6 but the conversation goes on to page 7 and beyond (i think)...

Sounds good Dank, I'll send you a PM with the contact info. Here is the link to clinical trial page about the study I'm talking about... http://clinicaltrials.gov/ct2/show/NCT01685801?term=ivacaftor&rank=19

I was in the study. However, after reading this, I'm unsure if I was in THIS study, or the earlier one with the lower dosage. It was prob 3-4 years ago or so. At first I found the capsules really hard to inhale, but I got used to it. The first puff always caused coughing, but after that it...

Hey everyone, thanks for the responses! There were a couple that I missed until now so I apologize for not responding. I have an update in case anyone is still following this thread.... I did not make it to Denver to be screened back in February, as I ended up with a nasty exacerbation that...

Hey Dank, Sorry, I don't really have much to offer regarding your question. I pretty much stick to the traditional medicine route and haven't really tried anything alternative, although I've certainly considered it. Hopefully you get some good replies. One thing that I have really been...

Hi Allisa! I *think* I can shed a little light on this issue for you as I went through the exact same thing a couple years ago! I was scared to death just as you are! Maybe even more so because I was pregnant and had a baby while Medicare was my primary! ;) So, I'll start by saying...

Hi hope, I checked out some of the old IVF/PGD threads and found this link, I think it might be what you're looking for. It gives a couple pretty good outlines/samples of what to say in the insurance letter...

Hi Michelle, Glad you found the answer to your question. I agree w/sugarcookie, I'm a little surprised they're letting you draw levels yourself. I'm 32 and have been doing home IVs for many years but have never been able to draw my own levels, although I feel more than capable of doing so. I...

Thanks Mikayla! Wondering if you have found any decent substitutes for cheese? I have tried tofu cheese slices, but wow, they were inedible. YUCK! I would also really love to find something to substitute in recipes that call for cheese, but I think I'm asking for too much. ;) I have seen...

Very cool!! Congratulations! Wow, 10 days? That is wild. You must be improving at lightning speed! :) Take care, and hope things continue to go fantastically!! Autumn 32 w/CF

Hi Evy, My situation is different because I'm the one w/ CF. But I can absolutely relate with your feelings. Our daughter is 21 months old and the questions about #2 have already started rolling in. Ugh. Every time it is asked it is like a dagger to my heart. Of course in a PERFECT...

Thanks as always Gen! I appreciate you keeping me up to speed. I've said it before and I'll say it again, I'm SO anxious to get my hands on Kalydeco it's ridiculous... Can't wait for the results from the n of 1 trial in Denver. I'm just doing everything I possibly can to stay healthy for...

They said IF the changes are adopted, they would probably start using the new criteria in the second quarter of 2014. I'm not sure when they are going to make the decision on whether or not to make all the changes they proposed. I haven't heard anything since the conference call they held on...

Wow Mikayla! I just briefly perused your site and you have put a lot of work into it. So much information! Thanks for taking the time and effort to do it! Admittedly, I need to eat a lot better and you have lots of good ideas/tips. The macadamia super shake looks super yummy and I might...

Thanks Eliana! I'll check it out again. Stinks to have to pay out of pocket for it, but it might be worth it! My doc said he would give me the prescription for it if I wanted to try it. Unfortunately, my doctor told me he thinks they are going to stop making mucomyst altogether. If he is...