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Wow again!!!!! Our pulmozyme is 100 as well!!! That is good info for new parents....I never dreamed some were having to pay that much!!

I am so glad that you are getting to try a new enzyme!!! I pray that helps ds!!! And may I say my mouth just hit the floor when I read how much it costs!!! Ouch!! That's triple the cost of Creon for us!! Bless your heart!! All though I do hope this is an answer to your prayers!!

I hesitate to respond because I do not know what the right answer is but I will share Abby's story. Abby use to culture it for about 2 to 3 years.....sometimes she would feel good others she would be sick...don't know if it was the MRSA or the Hflu or something else but when she did get ill was...

It just so happens I received a shipment today and the label reads $24,962.92.....thankfully our copay is only 100 :) Oh and that is for a 1 month supply :)

Mehlingfamily your daughters other mutation should work with Kalydeco!!! It really worries me about her weight....how old is she? I truly believe that Kalydeco would help your daughter. I was so excited when I saw your other mutation!! You should talk to your dr's about it if she is old...

Yep, Abby get's "red man's" really bad when she takes the IV form. They just give her benedryl before she takes it and it seems to work fine. It just makes her itch really bad if she doesn't get benedryl first. Abby took Zyvox as well...very pricey and it upset her stomach...you also have to...

We have Humana so not sure about medicare but I would take dr seems skeptical for an answer...I would find out for sure! My dr told me that he didn't think my insurance company would cover it...in fact it wouldn't surprise me if that was the only reason he wrote the script cause he thought they...

Our CF babies are blessings!! She teaches me so much!! And she too loves Ollie and Nosh!!! Our CF kids give us the courage to do it!! There are so many times that I would have completely fallen apart if it weren't for Abby being so strong. She kept me strong. I truly believe that God gave...

Can I just say that I LOVE LOVE LOVE you reaching out!! I am not a grandma but my mom supports me the way it sounds like you support your daughter!! And let me tell you....God has blessed me with my mom and I couldn't do it without her!!! I would put you in contact with my sweet momma but she...

No problem!! I really hope you can get it!!! Is your dr on board?

Abby is off label and all I had to do was get a "pre-authorization" and that was just a letter basically saying that the dr is writing a prescription for it....he didn't have to plead for me to get it or anything like that. It was really quite simple! They approved us for 2 years no questions...

Aboveallislove you always have the nicest way of putting things!!! I wish my brain would come up with such fantastic ways of wording things! And totally agree with Bill too "stand strong and come back for reinforcement!" Love this CF community!! And if your family wants to come ask me about...

That would be so amazing!! We are not sure where it comes from on my husbands side...we are sure on my side only because I have a relative that also has CF...so I can track it through the blood lines easy. However we haven't located anyone on his side that has had it :( So no telling if it...

HI!!! :) I'm the other mom!! Abby is 7 and her mutations are DF508 & 2585delT. 2585delT is a class 1 mutation with a frame shift and a stop codon because of the frame shift. She too is pancreatic insufficient and has had lots of sinus problems and some lung problems. Even though we have the...

Are you part of the group of "Kalydeco Miracles" or "Kalydeco for Austrailians" Aboveallislove?

I gotta throw my 2 more bits in again. I just want everyone to know that "a little bit of benefit" can mean more than what you think. I don't want you to think that it is even "almost a cure" cause it's not but a "little bit of benefit" can mean a quality of life change....it can mean not...

I'm not sure where you live or if this is everywhere or just good old Texas, but I will say that this year has been extremely horrible with the cold fronts making everyone in town ill with sinus mess. That being said I would want to rule out CF. If they do a sweat test make them tell you the...

Kaethe, of course this is just my opinion, but if you think of diagnosis if you only have 1 mutation you are considered a carrier and to not have CF symptoms right? Well if this helps the mutation F508 then it should HELP anyone with that mutation whether you have 2 copies or not. That is just...

Nothing has happened since 6/8/12. They have continued studies on muscular distophy. If you look at the CF drug pipeline it is still there...but I want to say I heard it wasn't going anywhere....I could be totally wrong and I hope maybe Genevieve will jump in for you on this one. My memory...

Love it!!!;)