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Wow, very interesting stuff! Thanks so much for interpreting all of this info for us. It really helps me understand! Now i'm off to check out your new blog.............. :) Autumn

Sorry to hear it was a dry run. I check the blog frequently too! Hoping the "real deal" comes soon! Take care, Autumn

Oh, hey, just noticed this is both of your first posts here at CF.com. Welcome aboard!!

I agree with Brian, China sounds a little scary. I understand your friend's desperation though! Brian, just out of curiosity I checked out IsraMeds and do not see that they carry Kalydeco. I looked for it under Kalydeco and Ivacaftor. Did you see that they had it? Take care, Autumn

I sent mine also. These changes will not only effect those who receive SSDI now, they will effect MANY CFers who need it in the future. These changes will be on the books for many years if passed. If anyone is interested in this letter to their representative go to CFF's site and they...

Just got this email from the Cystic Fibrosis Foundation: Dear Autumn, Social Security disability benefits help many people with cystic fibrosis access the health care they need and pay for life's essentials. The people who rely on these benefits are...

Hi Leo, I also struggled with transitioning. In fact, I was unwilling to transition until they literally forced me out the door at age 29. ;) They said the pediatric clinic could no longer see adult patients due to a funding issue. I'm still not sure it wasn't just a line to get all of us...

With the new changes the SSA is proposing to make to the respiratory impairment listing, this would be changed to 3 years. So that would actually be a positive change, as opposed to the other changes they are proposing. Muscle, sorry I can't be of any more help, I have no personal experience...

So happy that you got new lungs so quickly! Hope you are feeling well! Take Care, Autumn

Good work little man!! Tell him thank you from me for raising so much money and awareness!! I really appreciate it, that is awesome!! Autumn 32 w/CF

The Cystic Fibrosis Foundation is aware of the proposed changes and expressed their concerns/objections via letter to the SSA regulations department. The letter can be read here: http://www.cff.org/UploadedFiles/Get...ments-4-13.pdf Unfortunately the comments period ended April 5th and they...

The Cystic Fibrosis Foundation is aware of the proposed changes and expressed their concerns/objections via letter to the SSA regulations department. The letter can be read here: http://www.cff.org/UploadedFiles/GetInvolved/Advocate/SSA-Disability-Critera-Comments-4-13.pdf Unfortunately the...

This. These changes have been in the works long before Obama took office. They sent out an Advance Notice of Proposed Rulemaking (ANPRM) in 2005 in regards to changes to the respiratory impairment listing. As far as I can tell they have absolutely nothing to do with Obama or Obamacare: Why...

Debra, It appears for now you can relax. With your FEV1 being around 30% you meet the current impairment listing on that alone (3.04 A). You would not need to worry about the hospitalization aspect at all. You only need to meet either A, B, or C. You would clearly meet A. Also, with these...

I agree Debra, it is scary. I was approved for SSDI 4 years ago and actually am currently under a review. I am beyond nervous and thinking about what we will do financially if I lose it. Under the guidelines they are looking to change to I would definitely not qualify at this point. Ugh.

I think the problem, the way I understand it, is that they will no longer count home IVs as an intervention. They are saying that if it can be treated at home, it is not severe enough to count. This, IMO, is flawed logic. Many CFers do home IVs whenever possible to avoid the germs of the...

Hmmmmmm....... Very interesting indeed Craige! How ironic if it is pure coincidence! Have you seen the movie Foreverland? I remember hearing about it but I guess I missed when it came out. Welcome to the forums and thanks for posting that tidbit! Take Care, Autumn 32 w/CF

Hey everyone, So today my sister texts me (during her workday, which is odd) to tell me that her friend had just emailed her an article about a new drug, called Kalydeco, that was just approved to treat CF. So my sister was texting me with the thoughts/hopes that this new medication would help...

Hey Lindsey, I've never gotten colistin from Foundation Care so I can't say for sure, but yes, I believe you should have gotten sterile water too. I always got sterile water along with my colistin script. I don't recall ever hearing of anyone doing their own sterile water for inhalation, but...

I abbreviated tournament to "tourney". It's a college basketball tournament. Here's an excerpt from wikipedia: The NCAA Men's Division I Basketball Championship is a single-elimination tournament played each spring in the United States, currently featuring 68 college basketball teams, to...