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Hi Pebbles, I think that is pretty common. I used to always start out in the hospital the first few days (3 or 4), and then head home on IVs. Depending on how "sick" I was, it was sometimes longer (like when needing bronchs or having my port placed etc) Since having my daughter, however, my...

Ohh boy! ;) They keep us on our toes don't they??! Mine proves the nature/nurture debate everyday, and let me tell you, the answer is NATURE!! :)

I was told the same thing regarding Meropenum. I did my others in a syringe pump or the ball, but I had to hang the darn meropenum the old school way. Ugh. The other thing I wanted to mention in case it helps anyone, is that you may have to specifically ask (or even push) for the eclipse...

Hey J, Great info again, and thanks so much for all you do to help others with RF mutations get access to Kalydeco! Wanted to mention that I saw some info that 2 CF centers in Philadelphia had put together regarding 12 of their patients using Kaly off label. I was glad to see that there ARE...

Dad, While I am lucky enough to have my residual function mutation on the list, I agree with your sentiments and am so sorry for the folks with residual function who are being left out. I know for a fact I would be LIVID if my RF mutation was not included. With the evidence out there, we know...

Whoo hoo C!!! I looove good news around here. I'm so happy for you!

o Hi Carol, so sorry to hear about your grandson's allergic reaction, how scary that must have been. I'm also sorry to hear how many meds are off the table for the little guy now. :( I can only imagine how devastating that is for you all. I wanted to mention though, to Jamie's point, yes I...

Thanks for keeping us updated Love! I just checked out the slides on the Vertex website. It's truly amazing stuff going on here, things I really thought I'd never see in my lifetime.....

Holy flippin' cow Love, you are right! They did submit it and the FDA accepted it for priority review slated for Febuary! Whooo hoo! What amazing news, thanks SO much for posting!

Right?! That is an awesome change!

Absolutely! The Cystic Fibrosis Patient Assistance Foundation provides copay assistance for CF specific medications. They are a payer of last resort, meaning they pay after your insurance and any copay card programs you are enrolled in pays. In my case, they pick up my $100 copays for Cayston...

Hi everyone, just an update. I received a phone call from a gal named Sierra with the CFF in regards to the transfer to this new foundation. She was very nice and informative. Apparently, this new HealthWell is creating a new program for CF patients (which is why there's no mention of CF on...

Yikes, I just received this email from the Cystic Fibrosis Patient Assistance Foundation. Comes as quite a surprise that they are shutting down at the end of the year. I briefly looked at the Healthwell website to check out the guidelines and see what meds they provide assisance with, but it...

Have a great time Jeanne! Thanks for being there to represent us! Can't wait to hear more about it. :) Autumn

Me again, I think I fixed the link so it should take you directly to the mutation you are looking for. Then if you click on the "cDNA" name, it will take you to a page with a little more info and the link to the publications. :)

Hi there and welcome Twee! Thanks for the updated info. When your husband originally posted this I checked the "sick kids" database, which is a database that catalogs and describes CF mutations and found nothing. With the mutation you provided there is a hit with some info and some...

Hey there again Fel, I'm so glad he is feeling a bit better, hoping it continues! Hey this post brought up a big question for me...... am I understanding correctly that the only med he is nebbing is Pulmicort?? If so, I would REALLY question the reason behind that given the diagnosis, and...

Hi again Bill! Oh yes, Medicare doesn't cover home IV's, so 14 days (or longer) inpatient would be the case. I really think Medicare should cover home IVs, but that's a topic for another day. :) I completely understand your concerns about whether or not they are being seen at an accredited...

Hi love! Yep, as Gammaw said, my CF clinic is not staffed on weekends or holidays. The only person you can get a hold of is the pulmonary fellow on-call. If you are very sick and feel like you need to be seen they will advise you to go the ER. They wouldn't arrange admit or anything. :(...

Hi Bill, I don't think they are self-medicating at all. From the way I read it, the Cipro was prescribed by the CF doc a few days ago to treat his increased cough. Sounds like they've been in frequent communication with the CF doc. I think one of the things she was looking for with us was...