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Hello and welcome Ryan! I'm sorry, I don't have any info on invasive aspergillosis. I do know that many members here do (or have) cultured aspergillosis, but I'm not sure about "invasive". Weekends are usually a bit quieter around here, so I hope you will still get some good responses in the...

WHOO-HOO!!! Yay, soo happy for you!! How exciting!! Keep us posted! Autumn

Hi Ronda, I worked in a field where we were randomly drug tested. I was worried about all the meds I take, and especially if I were to be drug tested while on IVs and prednisone. I was told by my CF doctor at the time, that no CF drugs would give any kind of a false positive on a drug screen...

How exciting! I'll keep voting til tomorrow! Best of luck! Autumn 34 w/cf

So sorry to hear this. Hugs to the Greene family.

Wow, that's a bummer for me to hear that it will probably be hard to get into. I've contacted Houston and Dallas, the only other feasible center would be Tyler so maybe I'll contact them to. It's also a bummer to hear they are going straight off the residual function list. I, like others...

Thanks Martha! Looks a lot like Denver. Except Denver was 4 weeks on placebo or drug, then 4 week washout, then 4 weeks on placebo or drug etc... I think it was 26 weeks. There was of course, no 661 though..

Yes it's so weird that they don't much being as it says "enrolling" as of April 5th as you said. Do let us know what they say when you call them back! :) The coordinator in Dallas just told me that they don't know yet whether there will be an open label period or not. So I'm hoping that...

Hi Beauty, I applied for SSDI in 2009 and was approved. I had the help of Julie. In the 12 months before I applied, which is the period they look at, I had been hospitalized 3 times (on 3-4 weeks of IV antibiotics with each), had a sinus surgery, a port placed, and a bronchoscopy. My FEV1 had...

Hi there, just have a minute, but wondered if you know what specific port you have? I ask because I had the purple "Power Port" and it was quite large. I have a pretty big bust, so it it never stuck out a ton. It was/is always the scar that I didn't like. I only had it for a few years before...

Hello and welcome Mstein, I'm sorry for the reason you had to find us, but glad that you did! I was diagnosed as an infant, so I'm not really the person you were looking for advice from. I just wanted to chime in to reiterate what others have said, in that it is very likely you will feel much...

Thanks so much for the update! It's so goofy because the study was updated to say "enrolling" as of last week on the clinicaltrials.gov site. Given that, I'm surprised at the lack of information everyone seems to have. I did email the coordinators and Houston and Dallas and heard back from...

Thanks to both of you!!

Yep, exactly. In this case the guy bilked the State's Medicaid program for over 2.5 million dollars, just on Tobi. We all know the funding problems Medicaid has in every state, so this is just sickening to me. That money could have gone so many other places. :(

Exactly, now the next time they tell me that we're waiting on a "prior authorization" I'll try to be a little more understanding. ;) Really though, Tobi almost always requires a prior authorization, which requires the prescribing doctor to fill something out. So if these docs weren't writing...

Hi Believing, I would second the points that Jaimers and Ethan have made, in fact, I think Ethan makes excellent points.... and I also just have a couple minutes so I'll try to hit the highlights here. :) To directly answer your question, yes, I am quite certain you have helped people on...

I've had absolutely the same thoughts! The Denver trial had a 2 year open label, and from what I've heard, most (if not all) of the Vertex trials have at least some open label period. It would be amazing to be getting the drug for free as well!! I have concerns, as I've heard many others do...

Hi All!! This article immediately made me think of Liza's (Ratatosk) situation with finding her pharmacy was billing her insurance for Tobi that she never ordered or received....This is a pharmacy in the Nebraska town we just moved from. There is not a CF clinic in Lincoln at all, but it says...

Awesome Dank, thanks!! Autumn

Darn! Too bad she didn't have an answer. I also hope the inclusion criteria is broad. Judging by the language in the description on clinicaltrials.gov, it's really hard to tell how they are going to determine residual function. There are no qualifiers for it like their were in the Denver...