Search results

Happy Thanksgiving to you and yours Pat!

Happy Birthday!! GO Claire!!

You're welcome Jim! You won't be sorry. :)

Very cool Elizabeth, can't wait to see it! Keep us posted when you know when the episode will air. ;) Autumn 33 w/CF

Hi Pitt, We switched to a HDHP w/HSA a couple years ago. I was just like you, sooooo nervous I was doing the math wrong, or understood the plan wrong. But I took the leap, and it has worked out super well!! You are reading it correctly that after you've met the out-of-pocket max you will...

Hi erock, I was just perusing some old threads on NAC, and came upon this thread: http://forum.cysticfibrosis.com/threads/8568-First-night-on-PharmaNAC?highlight=Acetylcysteine One of the posts shows Bioadvantex's claims as to why the fizzy tablets are superior. I just copied and pasted in...

Bwahahaha!! So true. So true. It is foul smelling stuff. The funniest to me is the respiratory therapists in the hospital who don't want to give it because of it. I think I've become desensitized to it, plus my sense of smell is shot from more sinus surgeries than I shake a stick at! I have...

Hey Chaos, I've been thinking of trying oral NAC for a long time now, not entirely sure what I'm waiting on. I'm one of the few who still neb mucomyst. :) I do know of a few people who take NAC. From what I've heard, it needs to be the "fizzy" tablets (think alkaseltzer). It has something...

Wow, pretty interesting stuff Sam, thanks for posting! I have S945L, a residual function mutation which was mentioned on your blog. I am definitely one of those that are anxiously awaiting Kalydeco. I would LOVE if this combo did anything to help in the meantime. I was looking at ordering...

Thank you all very much for your replies! I really appreciate it! Soooo...... first I tried the chocolate syrup, it was a no-go. I tried to feed it to her with spoon so that maybe she wouldn't recognize it as medicine, nope, she could smell it and said "meddy" and started crying. So then...

Hey everyone! I'm the CFer in our family so I'll hope you'll forgive me that this isn't directly CF related. ;) I just figured this is an excellent population to ask this question! Our 23 month old daughter has a nasty sinus infection and was prescribed Augmentin. We had it flavored at the...

Hi Matt, Sorry you are having a rough time. I have only had a couple bronchs. I remember waking up and actually feeling MORE congested for the first day or two. And then I started to feel better. They said this was normal, and also said that it is normal to cough up blood streaked sputum...

Hi Christy! It's actually LOW elastase levels they are seeing in relation to pancreatitis. In order to qualify for the study under the fecal elastase criteria it needed to be 250 or over. My fecal elastase was 25 when tested a few years ago, and when tested last week for the study she...

Thanks Martha. Yes, I agree, it is hopeful info. about the label expansion. I hope when/if it is expanded, however, that having a residual function gene is enough. I know CFTRsplicing mentioned that they may also look at phenotype when deciding who gets it. I'm guessing since I didn't get...

Hi Rowan, In my state home birth is against the law across the board, so it was never something I entertained. Although, I can't say I likely would have entertained it anyway. My pregnancy was smooth. I consulted with a high-risk OB early on in my pregnancy, but then was able to stay...

Hey everyone..... A bummer of an update. I was notified today that I didn't make the cut. :/ My sweat chloride came back at 88 and 92. I'm pretty bummed about it, but at least I know I did everything I could to try to get in. Maybe I'll be able to get into to another one. In the meantime...

I emailed the coordinator back in December of last year. We have been corresponding back and forth since. I'm sorry they never responded to you! That's a bummer. It initially took her a long time to get back to me, but eventually she did.

Hi jricci! I was originally supposed to go to be screened back in Jan/Feb also. But before I could get there I got a nasty exacerbation that went on forever. By the time I finished IVs and got my lung function back to baseline the study was full. Flash forward to a few weeks ago when they...

You're welcome! What did you find out at your clinic appointment today? I tried hard to get my doc to prescribe it and provided lots of evidence that suggests it works very well with my mutation, including that my mutation is listed in the patent. He still would not do it. Ugh. I hope you...

Hahaha!Glad to hear I'm not alone in my quest for sweat.. I imagine I was quite the sight. I was actually more worried about the sound of my flip-flop sandals clip clopping loudly as I trucked along. I worried people in the offices I was passing would be getting annoyed. I really thought...