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Hi Cam, do you mean Lynovex? Chris Baldwin just posted about this drug receiving Orphan Drug status by the FDA. I believe it is in phase 2 clinical trials. I haven't personally heard anything about it, or know of anyone in the study. Would love to hear if anyone has! :) Here is the link...

Hi everyone! I put this in the off topic section because I am asking in regards to my 2, almost 3, year old daughter who does not have CF. I just figured this forum is a great place to ask since the parents of CFers have lots of experience with doctors. As many of you have probably read in...

Hi Terri! I'm afraid I won't be the type of help you are looking for, but wanted to chime in, just in case it helped at all. ;) And hopefully others who can better answer your question will see this too. I would venture to say the biggest issue would probably be with weight gain and being...

Excellent reminder about probiotics. It's so easy to forget that that gut health also plays a big role in the immune system. I've been doing better with remembering my daughter's(no cf) Culturelle since I read your post. :) Autumn 33 w/cf

That's great Meech, sounds like they are being thorough. Please keep us posted. I hope CF or no, you are able to find answers soon! Take Care, Autumn 33 w/CF

Hi, I'm sorry, I agree it's super scary. Here's a link to another thread about Enterovirus 68 posted yesterday you might find useful: http://forum.cysticfibrosis.com/threads/106771 Take Care, Autumn 33 w/cf

Yes, I've been seeing/reading it all over the news. :( Scary. So hard with little ones to keep germs at bay. I'm the CFer in our family, but I have a 2 year old daughter and no matter how often we wash her hands it seems like she's always sticking her fingers in her mouth or nose, and/or...

BINGO!! :) I thought I was the only one that did that. I did that for a couple years while we had our high deductible health plan, and it worked amazingly! At first I thought the HDHP was going to be terrible, but it turned out to be awesome. My husband just started a new job in March, and...

Hi Lexi, I have CF, and I am also a mother. I can tell you that I 100% understand you wanting another child. I can also tell you that while my HEART absolutely wants another child, my HEAD says absolutely not. The unfortunate part is that my brain cannot shut off the feelings in my heart...

Hi Draz, So I'm afraid I won't be of much help, but I want to pitch in what I know so far! :) We just moved to San Antonio from Nebraska about 3 weeks ago. I have not had a clinic visit yet, but have one scheduled for mid-September at the Austin clinic. I opted for Austin because I have...

Completely agree, it is beautiful! I'd also be very interested in something that stores my vest machine and neb compressor in a more aesthetically pleasing, yet functional way!!

Not entirely accurate regarding Medicare. I am 33 and have been on MedicARE for a few years. Many CFers are on Medicare, especially those that are "sick enough" to need a transplant. While for most Medicare is only available after age 65, one also qualifies for Medicare after being on Social...

Wow, very interesting! Will definitely keep my eye on this. Thanks for posting! Autumn

Hi Jessy, SO sorry to hear you are having trouble with the SSA and disability. I have had my own problems with them (getting kicked off at a review because they said I had "medically improved"-HA and appealing) and I know the stress/worry looming over me honestly made me feel sick. So I...

Curious, do you rinse them afterward? Sounds like a good idea, but seems like then the vinegar would need to be rinsed. Maybe not tho?

Hey Mike, Can I ask what pharmacy you get Cayston from? I ask because I get mine from CF Services and have had repeated problems with them billing things correctly. I'm wondering if there is a chance they billed it to the assistance foundation incorrectly, or at all? Last I filled Cayston...

I did one YEARS ago. I'm thinking I was probably 14 or 15. It was an interesting experience........;) For me, drinking the stuff was a chore. I remember having to drink A LOT, and it didn't taste good. Hopefully it tastes better by now. Mine wasn't mixed with gatorade, it was something...

Ugh, sorry, what a pain!! My gray cord broke awhile back too, prob about a year ago. The part that hooks onto to the neb cup cracked and wouldn't securely attach. I called CF Services Pharmacy, because that's where I got the machine. They kept me on the line and called Pari for me on a 3 way...

Hi kchat! I continued Pulmozyme, albuterol, and hypertonic saline. My doctor stopped azithromycin throughout my pregnancy and during breastfeeding. I hadn't used Tobi for quite a while prior to becoming pregnant, so not sure what my doc would have thought about that. However, I know of...

First off, congratulations!! Number 3, wow! :) So, I don't remember whether I noticed it more during treatments or not, but I did experience pain in my lower belly (waay lower belly, just above my pubic bone) during pregnancy. Not sure how far along you are, but it was pretty early on for me...