Search results

No, you're most certainly not being a nag! I really appreciate that advice! I'll check on our insurance policy online. I think it's great advice because it's something I can rebut them with when they pull the flat "insurance won't pay for it" card. Thanks a bunch for all your help, and...

Wow, how cool that your doc is trying to publish his patient's experiences with Kalydeco! That is awesome. This thread shows me that there are people (doctors and patients) out there REALLY trying to help get Kalydeco to us ASAP. :) I think maybe we SHOULD stir up a hornets nest about...

Thank you so much J! I really appreciate your response so much. :) It is indeed frustrating, and I feel like my anger/frustration is becoming more evident in these posts. ;) I don't want to sound like a broken record (as if I don't already), so my story about the doctor's saying no is in...

Thanks Stephen! I totally agree. I'm glad your doctor is open-minded and was willing to try. It's beyond awesome that you are on Kalydeco. :) Unfortunately, I have tried to get my doc to prescribe it. In fact, I'm on my second clinic and still being told no. I didn't just go in there all...

Yes, I have S945L. In the Van Goor documents it's shown to respond very well to Kalydeco alone. It has been super frustrating for me to sit back and wait with the evidence that is already out there, but alas, we have no other choice. ;) It will be interesting to hear exactly how they are...

Thanks Love! I don't see any specific criteria for "residual function" either. In the Denver trial those criteria that you are referencing were listed under the "inclusion criteria". For Denver you had to have a sweat test UNDER 80. This one says a sweat test OVER 60 (or documented evidence...

Hi again everyone! Just keeping this post alive.... :) The Phase 3 trial for Kalydeco/661 in subjects with DF508 and a residual function mutation has been posted to the clinicaltrials.gov site. You can read it here...

Hi Believing, I tried the Electro flo 5000 probably about about a year and a half ago. Jane had one on hand that she let me take home for the 3 months between clinic visits to see if I liked it. So I'm guessing she still has it for people to try out! I personally did not like it at all, but...

Hi Georgiagirl, Sorry you are experiencing ringing in your ears. Ugh. I've been cycling Cayston 28 days on and 28 days off for a few years now. I've also done several rounds of IV aztreonam. I do have occasional ringing in my ears but have never noticed a correlation with Cayston. I...

This. Amen, Jamest. As others have said, supplementing traditional treatment with natural/homeopathic options is one thing. Using natural treatment in lieu of all the modern medicine (some of them actually are natural as was pointed out) we have is quite another story. Wishing the best of...

Hi and welcome Jrod, I'm really sorry that you guys are having to deal with the stress of insurance stuff when planning your wedding. Honestly, you sound pretty informed so I think you will be able to figure this out it will just take some work! As "Cat in the Sunlight" (love that name...

Oh darn, sorry you're not back where you want to be. :/ I just wanted to mention that sometimes I'm not quite back to baseline when we finish IVs, but by my next appointment or so I am. I always think my body needs a little time to recover from the IVs etc. I know you mentioned you were...

Hi Dank! So I'm pretty late to the ballgame here, AND what I'm going to say is not what you are asking at all. Helpful, huh? :) Being as we share a "weirdo" mutation (that's what I call it), and you mentioned you don't produce a lot of sputum, I figure it's worth mentioning. I didn't used...

Hi Leah!! Someone else posted a similar (but different) question recently, some of the replies there may be helpful: http://forum.cysticfibrosis.com/threads/121352-Help-with-Sinuses-Recommendations-needed-to-break-up-sinus-junk! I use a Waterpik with a special sinus attachment for sinus...

Hey, just curious how it's going? Did you get your PICC? I hope everything is going well and you're on the mend. :) Autumn

Hi and welcome Mike! Sorry you needed to find us here at cf.com, but glad you did. I've had pancreatitis many times, and always wondered the same thing. I always thought it seemed odd to take enzymes if your lipase/amylase levels are already elevated. I, however, have not had pancreatitis...

Hello and welcome JPT, I'm so very sorry to hear of the loss of your son. I struggle with many of the same questions you have, and find myself being somewhat jealous of those with stronger convictions. I hope over time the pain will lessen and you will find some peace. Your son would want...

Hi there! Sorry you are feeling funky. :( I do know that feeling of feeling kinda crappy, yet PFTs are unchanged. Or feeling good, yet PFTs are tanked. It's super frustrating to me when that happens. I like to have some vague idea of how I'm doing! ;) My one thought is that, although...

The attachment I have is not like the ones I have seen online that just have a little cone shaped thing at the tip. My entire attachment, prob like 4 inches, is a bendable rubbery hose thing, with an even softer part the last inch or so. I might try to upload a picture for you if I can figure...

Right now they are just waiting to hear from the SSA regarding their decision. The SSA said they would make the final decision in October 2014, but has yet to decide, apparently. They (the SSA) stopped taking any public comments way back in April of 2013, so there really is no negotiating...