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Peter! So fun to see yall on here! We miss you two and I know Chris would love to see you while you're still in MA.

Counseling may be helpful just to have someone help you both think through all of your questions as well as some questions you not have thought about!

I don't know of any organizations off the top of my head but you could contact Jeanne Barnett (founder of this site) and Chris Baldwin (CEO of the site) as they both do a lot with healthcare and technology and may have some recommendations of who to contact or speak with about partnering with...

It's possible your sons symptoms could be cf. Either way with the issues your son is having I would seek a second opinion since it doesn't seem that your current pediatrician is doing anything to help your son. You could ask for a referral to the closest accredited cf center for a sweat test...

Dank have you checked out the alternative medicine forum on here? There are people trying a few different things on there that you may find interesting. I went back in the history of posts there (there aren't a lot) and saw someone mentioning the CFRoundtable newsletter that discussed...

I'm so glad to hear this! Sounds like things are moving in the right direction. Glad your pediatrician is helping you get a new pulmonologist as well. The one you have sounds like he's letting his huge ego get in the way of admitting he might not be correct about your daughters health. Good job mom!

Nothing to add to the great advice you've been given but just wanted to say you're doing s great job fighting for your daughter so hang in there!

So cool! Thanks for creating this--looks like it can be a really helpful tool :)

I think someone else mentioned on another thread that they were denied insurance coverage for the Aflovest because they had the hillrom vest already covered. I wonder if they would cover it if you didn't have another airway clearance device already?

Good thoughts! I'm not working right now and am in pretty good health but cleaning is quite possibly my least favorite thing in the world to do. That being said I don't like living in a dirty house so I at least make an attempt to keep it clean ;) Cleanmama.com has a free printable list of...

Also as Aboveall mentioned make sure both the doctors themselves AND the hospital are considered in network. I ran into an issue recently under new insurance coverage where my hospital was in network but my doctor was not even though he works at that hospital! Crazy. I ended up asking him to...

I've succesfully gotten it through an employer before but have been denied since I stopped working and just tried to apply for it on my own. I think there have been a few discussions on this in the past so if you search the forums for "life insurance" you should find some older discussion...

Hey guys I know this is a sensitive topic and all of our situations are different which may result in differing opinions but let's still be respectful of one another's opinions and take a few minutes to think about your response in the heat of the moment before hitting send. as patients and...

I get Bethkis (new Tobi formulation) through foundation care and they do send "generic" HTS, not the brand name Hyper-sal. I Ended up with a backlog of HTS and switched over to getting the vitamins. They are called Choiceful and are basically the same as the ADEKs/aquadeks without being the...

I'm pretty sure You don't have to disclose the specific reason why you need time off under FMLA. I've worked for a mid sized company and a larger company and never had anything but incredibly positive experiences when CF issues came up that affected my work (hospitalizations, etc). I never...

With your weight issues and the "eating tons but never gaining weight" it certainly could be CF. As someone above me mentioned its defintely worth asking about rather than waiting for more damage to be done. If you're scared to ask maybe email your concerns to the doctor and ask to discuss it at...

The cough could be from the drainage in your nose. It sounds like you may need to go see your ENT again. Do you do any type of sinus rinses? They have medicated ones as well as plain saline and that may help you. As far as your concern about CF--do you have other symptoms besides your sinuses...

I'm so sorry you're in this place of limbo and that your little girl is having such a hard time! It is defintely possible to have lower or even "normal" sweat test numbers and still have CF. With over 1800 gene mutations causing CF it can present very differently from person to person and...

Hey lance I'm not in Colorado but here are some older threads with information that you may find helpful. You could also contact the social workers at the clinic there and I'm sure they could help with info about this...

I have used exercise in place of vest treatments before as well. I didn't replace the vest completely with exercise but certainly a treatment here and there. Like Gammaw mentioned there are other options for airway clearance that might be really helpful in conjunction with exercise. I have an...