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Hi all!! There are several of us in and around Bryan-College Station that get together every now and again. If you live around this area and would like to get to know some CF moms and dads please feel free to give me a shout. We have a really wonderful time and we also learn so much from one...

Jeanne thank you so much!!!!!

I received 2 spam emails here that were very inappropriate. Did anyone else receive these? It is totally disgusting that someone would come here and do this to this community. Just wondering if anyone else got these as well or if I was just lucky.

Absolutely!!! There is the Cystic Fibrosis Patient Assistance Foundation. Web address is www.cfpaf.org and the phone # is 1-888-315-4154 There is Genentech Access Solutions http://www.genentech-access.com/ 1-800-240-1224 There is Patient Access Network Foundation...

I have lived here my whole life and we have BCBS 20/80. They have covered all of Abby's care no problem. We go to Texas Children's and love it. We get co-pay assistance and hardly pay anything for Abby's meds and it's not because we are poor...CF just has great co pay assistance programs...

My daughter was having sinus surgery every 3 months for a while and considered putting her on Ibuprofen therapy as they called it, but they had told me that they had pretty much quit that practice as it was hard on the liver or kidney's... I can't remember which now. Just thought you would want...

Hi my daughter is on Kalydeco right now and all I can say is I would jump through any hoop to get in on the trial they are offering you. Unfortunately she is too young. The Kalydeco alone is helping our daughter so much I can not wait to get her on the 809 with the Kalydeco. My advice....get...

Ok so Abby's main thing was her awful awful sinus'!! She was constant with sinus infection and sinus surgeries....it was never ending :( Since Kalydeco which we started in June of last year she has only had 1 sinus infection and no hospital stays or surgeries!! She had this I am so ashamed to...

I think each kid is different like some have sinus issues and some have lung issues so I would think each "plan" should be according to what your little one can tolerate well. For instance Abby had awful sinus issues so bonfires or smoke of any kind set her off and usually resulted in a...

***KALYDECO OFF LABEL*** We are trying to get together some information to help CFer's in the future get the help they need. If you feel comfortable sharing your information for the benefit of our wonderful CF community please email me at jcurrie@1starbank.com. We are looking for anyone who has...

While I see everyone's point. If I had not tried it. If I had not pushed to get Abby on it before we found out what her 2nd mutation was I don't even want to think about how many more surgeries we would have added to the 15 she had prior and IV treatments she would have had to endure for no...

Wanted to throw this out there as well. Sinus rinses are the best!! I can't do without them while Abby is sick. But one of the last times she was ill I started doing them 3 times a day because the poor baby needed so bad. Each time I got a lot out however it dried her sinus' out so bad that...

Very true Steve! I wish they would give people an opportunity for a 90 day trial to see if it works. In a perfect world the cost would not be so astronomical and again we wouldn't be having this conversation. But here we are and I am just grateful that my little one had the chance to try and...

I agree!! I hope this opens a lot of eyes and hopefully will make the insurance companies get with the program and stop the russian roulette.

Mama Bean I would be curious too and asking the same questions... :/ That is so odd. Did the Dr's give you any kind of explanation as to why they would come back so different. I am curious as to what they said could be the reason for the drastic differences. And CF is a lot to learn but...

I can't believe that no one has posted this yet!!! If you haven't seen this today....you need to take a minute and watch it!! This is a story about how siblings that have the same Dr, same CF genes, and same health insurance got two totally different responses to their Kalydeco request...

I don't see an issue with it. But may I just say how very very VERY brave you are!!! I have the worst fear of spiders....especially super sized ones!!! Good luck girl!!! Right now we are nursing a baby dove, a baby raccoon, and we have a large rabbit in the house that was threatening to die...

Abby is on Veramyst.

Vacation Bible School

I agree with Ratatosk about the nasal steroid...they seemed to work wonders with Abby. Other than that when Abby would start coughing like you are saying her sinus' was generally the culprit but she never has been very sick with her lungs. But if they just removed his adnoids I would think...