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I have talked with my insurance company and they told me that the doctor is the only one that they will speak with. I would love to fight the fight, and if you think that what they told me is not true, I will call and call until I am blue in the face to get this approved. Thanks so much!! I...

We went Friday for a regular clinic appt and to discuss getting a trial prescription of Kalydeco. Abby just finished a round of Clindamycin on Wednesday which apparently helped because she had the best PFT's she's ever had!!! So very excited about that!! Her normal range FEV1 stays around 1.25...

Oh good!! That was a heck of a coincidence! Thanks for letting me know.

I purchased a spirometer about a month ago from a company called Allergy Be Gone on Amazon in the hopes that I could keep up with Abby's lungs. I have only had it about a week because it shipped from over seas. Today I got an email from cystic fibrosis.com to both of my email addresses that I...

What kind of chest therapy do you use? We have the vest and absolutely love it. My daughter also did not want to sit through all of that so we got her a nintendo ds and some games that she can sit and play while doing her vest. She also loves to play v smile and watch special movies that are...

Thanks so much for updating!! I hope you're right, maybe the Kalydeco is keeping you healthy through that thick smoke that would bother even a healthy person's lungs. Good luck with grad school!!! Please keep us posted in the future!! <img src="i/expressions/face-icon-small-smile.gif"...

Our doctor made comment at our last Family Synopsis that living in Houston, they tended to see many more cases of MRSA than other clinics because of the climate. So I guess some climates could harbor more germs as well as altitude I would think make it either easier or harder to breathe.

I would tend to think that there was an error with her sweat test. I can't remember if I saw the post on here or facebook, but one mother that her child was taking Kalydeco went and got a sweat test after being on it for I think a month and was disappointed at the results because they were...

Your post absolutely broke my heart! It is unbelievable that the CF Foundation wouldn't help you. I thought they were on our side. I am so sorry for you and your daughter! That is one of the cruelest things I have ever heard. Your daughter clearly needs the help NOW! And I agree you should...

Yeah!! Happy for you!!!

My daughter cultures it off and on, and knock on wood, she hasn't had PA since she was first diagnosed at age 2.

<span style="font-family: 'Times New Roman', serif; font-size: small;"><span><span style="color: #1f497d; font-family: Calibri, sans-serif; font-size: x-small;"><span>So frustrated...here I thought that Abby's testing had starterd possibly 30 days ago. We go on the 15th to a clinic where we are...

We always go home on IV meds as soon as they get her levels right. Your own bed and food beats the 2,900 per night room that has terrible food and not much chance for a good nights sleep to help you get back on your feet. We love it.

That is fantastic news!!! So happy for you!! Thanks for keeping us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Red Man is a reaction to the vancomycin. Most of the time is just turns you red and makes you itch and they treat with Benedryl before giving you the vancomycin. But it sound like they had a really really bad reaction. I also read further up about the Gentomycin and my Dr told me that...

I printed everything I could find on people taking it off label (Thanks to those for paving the way <img src="i/expressions/face-icon-small-smile.gif" border="0">) And I took him a huge stack of papers to back up why I believe my daughter should be allowed to try this life saving medication. I...

Thank you Mandy!!

Thank you Mandy!!

I agree saveferris2009!! I am trying right now to get my daughter a prescription and being met with some resistance. I took my doc a hand full of paperwork this weekend though!! I pray he reads it soon and gets back with me and does not drag his feet. And sweet Rebecca just gave me some more...

Hi Steve!! We are going through the CF Foundation and their MAP program. I know that Abby's blood sample was sent to John Hopkins, but I didn't know if maybe that was still Ambry that actually did the testing or not. Just curious.. Thanks!!