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ask someone to send out a request for meals through TakeThemAMeal.com to all friends, family and church in the area. Then you post it on FB and blog for even more people! I prefer a Tues. and Thurs. schedule and hopefully they will make enough for leftovers the next day. Have the sender say in...

I don't know how you go about this but I want to applaud you for planning ahead! Maybe you could get advice from Beth Sufian's law firm? Could you update this thread once you figure out a path forward so others can learn from your experience?

Yes, I have taken it. I think it is only used clinically for the treatment of MRSA and maybe even only people that have MRSA and PA. I think I may recall it doing something to help "trick" the mucoid wall on bacteria. Personally I was never put on it until I had a MRSA positive culture. For me...

if you don't hear from her within 24 hrs let me know.

Just checked FB and noticed that a Ivonne Leiva Palma has joined that Vertex group I mentioned previously in this thread. She is from Santiago and is researching how other countries have petitioned their country to approve Kalydeco. She says she has "children" so maybe there are at least 1-3...

<a href="http://news.cnet.com/8301-17938_105-57516173-1/see-how-healthy-your-lungs-are-just-blow-into-your-phone/?part=rss&subj=news&tag=title" target="_blank"> What do you think of this? Sounds cool but not highly accurate. If I have an ability to measure at home I would want to see what my...

I'm all for alternative therapies that have basis but I'm very skeptical about what you are mentioning here. Ozone is a oxidizer and would oxidize the hemoglobin. The body would consider this a free radical and attack it only causing inflammation. The inhaling of hydrogen peroxide would cause...

So glad I saw this thread! I receive Cooking Light which had an article with 15 different banana breads. I made a couple & one had a delicate peanut butter drizzle on it. I have found it...

Hi Chile Mom! I'm excited to hear you are coming to NYC. I am only around 1-1/2 hrs. from the city. I would love to meet up...with you, Jeanne, and anyone else! Personally if I was going to a country that was a leader in research and treatment for a disease my child had I would only want to...

I can see this thread but no question or link to a thread that you are referring to.

It's a category B so it should be pretty safe. I know of two people who are pregnant and on Kalydeco. I am encouraging them to write a paper about it if their doctor's do not.

Here are some things I do to make the OGTT easier: 1) It is hard and time consuming, try it with a kid...not worth the hassle so although I like to hire babysitters for more fun stuff than OGTT, I suggest hiring a babysitter so you can make it all about you. 2) Bring a sweatshirt, a pillow and a...

Tucker, Why do you qualify for SSDI and when did you become 'disabled'? Do you feel you are able to work a 40 hour work week M-F without compromise to your health? Without knowing more about the status of your cf I find it difficult to advise.

Great news! I am not a Chase customer. Am I able to vote somehow?

When I saw it today I thought someone had hacked the website. The site is still not fully operational. My hope is that the logo that is showing with 3 balls rising isn't it. I hate it! I liked the last logo. I thought it was very versatile. This one with the colored background is not ideal. It...

G551D and DF508 - 3 Zenpep Strength 20 - 3 with meals and none with snacks. No change in enzymes once starting Kalydeco but have noticed I have fewer, firmer, larger b.m's. Sorry if TMI.

Is Josh's medicational "station" set up next to that window and that is why he is doing all this "noise making" next to the window? He's not spitting out the window as I read it just that he is doing his vest and treatments by a window. I say adjust the time of treatments to not be doing them as...

I think you should see your doctor. You have an explanation of your symptoms. You need his support in transfering of care and given how close ATX and SA are to each other he should be able to tell you who to go to in SA. Have you tried looking up on cff.org for the accredited cf centers in SA?

How would the medical coverage be through the employer? If your copays, premiums & co-insurance are going to be higher than the difference that the new job offers I would stay with your initial plan. Something else to consider is once you are accepted to state aid, and you decline it, I feel...

As long as you've been on the medications before in patient, he shouldn't have a problem with you getting home care. He may want you there until your levels are fine (day 3 or 4) but then you'll need to get them checked again on day 8 whcih you can do at Quest or through your home health care...