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I voted a couple weeks ago. Do you know if we can vote multiple times? I really hope others will see this and vote for her. It's SO important that she live in a home that is safe and healthy for her lungs! Good luck and take care, Autumn 34 w/cf

Me again, a follow-up question.... Was the sweat test done at an accredited CF center? I reread your message and wondered if it was done somewhere else since you mentioned you see your pulmonologist tomorrow. I'm always leery of anyone other than an accredited center doing them........

Hi Elizabeth~ I recently had a sweat test to see if I qualified to participate in a study. Collecting enough sweat was VERY trying. The first try I produced very little sweat, not even close to enough for the test, although when we took the electrodes off my arm was still wet with sweat. So...

Hey Muscle, sorry for the delay. I have deleted about 20 private messages and it still won't let me send or receive PMs. I've gotta figure out what's going on.... That is the email I used to initially contact her, however, she does have a personal email that I correspond with her through...

Wow, what a bummer on the wait!! Ugh. Sorry, that has got to be frustrating. Hang in there, and thanks for the update. Autumn

Yes, you can absolutely ask questions! Sorry, I've been on the road, but tonight when I get home to my computer I'll try to cleanup my inbox!

Hi Muscle, I do know Julie. She assisted me with both my initial application for SSDI (awarded benefits on first try), and when I had to appeal after having my benefits terminated after a review found I had "medically improved". Ha. Anyway, we won the appeal also. As far as I know she is still...

Amen to Stephen and Love. I have NO idea why my doctor wasn't even willing to try.... his only answer was basically that they weren't prescribing it off-label because they had tried for a couple other patients and insurance was denying... Also that Vertex wouldn't provide any copay assistance...

Awesome!! Good luck again, I so hope you are able to get it. Do keep us posted please! Autumn

Hey J, Let me know if you don't hear from Martha. I'm not sure how often she's around here, but I did just see her post yesterday, so hopefully she gets your message. She's a better source, but I have the information she sent me to try to help me get it off label. It didn't work for me :(...

Good to see you around Martha! I'm so hopeful they find a way to add the residual functions to the label soon as well! I never did convince my doctor to write me the prescription off label, even with all the evidence you helped me with. UGH. Love, thanks for that info. I had read all the...

I voted also! Good luck you and your family, so sorry to hear you are having a rough time. Take Care, Autumn

So, not a blog, but I just stumbled across a FB page called CFAware that seems to be posting updates from the conference and has videos from some of yesterday's sessions available to watch. I didn't try to watch it yet, as I'm on my way out the door, so not exactly sure what it is, but thought...

I'd be curious as well!

Thanks a bunch everyone, I really appreciated it! I did go ahead and find a pediatrician. It was no easy task. :( I had one in mind that I had heard good things about. Well, they were not accepting new patients, and said they hadn't in two years. Yikes. So I had to go back to the drawing...

Hi Semnle34, There is a member here who has done this, and is currently raising money to go for a second time. Here is a link to a thread where he discusses it: http://forum.cysticfibrosis.com/threads/93742-Stem-Cell-Therapy-Has-anybody-done-it-or-know-anyone-who-has?highlight=regenocyte I do...

Welcome Amy! Wow, diagnosed at 33. I continue to be surprised by all adult diagnosis around here, although it is happening more and more frequently. I'm also 33 w/cf. I also have Df508, and one rarer mutation, S945L, but I present with pretty classic CF. Thanks for the introduction and hope...

Welcome Tim! Wow, you have quite the story! Thanks for sharing, and hope to hear more from you around here. Autumn 33 w/CF

Hey Meech, thanks for the update, but i'm sorry to hear it's not what you we were hoping. There is a silver lining though. If you end up being definitively diagnosed they will get you started on all of the CF treatments and you will start to feel better! I've heard of people who's health...

Hey Ladybird, Yes, I definitely think it would be great if there were a way we could streamline the whole process of washing and sterilizing nebs! It's very time consuming, and just a hassle all around. Everything involves some sort of washing first (ie. soapy water)) then rinsing, then the...