Recent content by 2005CFmom

My daughter always did it twice a day. Qvar, Advair, and now Dulera with all three she did them twice a day. So I don't know if there would be a difference doing a stronger dose once a day. PS just to be clear, she is not on all three meds. She started with Qvar and was switched to Advair and...

Awesome information! I have been meaning to get new spacers and this post has made me do it. Can't wait to be able to use the sanitize setting on the dishwasher to clean these. I will admit to hardly ever cleaning these things...bad mommy!

Thanks, we do get the copay assistance for both drugs! We had switched all of the specialty drugs over to my husbands insurance plan hoping to cancel our second policy once we know everything was covered. Sadly, we were unable to get my daughter to a CF center. They just wanted her to be...

Hi Meg, It will vary from State to State and policy to policy so you will just have to see what the plans cover on the marketplace. We do have an "Obamacare" policy for my daughter, but we also have a healthcare policy for her through my husbands employer. Right now our copay for specialty drugs...

I homeschool too! Jeanne mentioned this thread when I met her yesterday. Must have missed it because May was absolutely crazy! Graduated my first in May and have a Junior in high school this year. I started homeschooling when they were in 5th and 7th grade and we love it.

Just got home from our long day. First, we had a wonderful visit with Jeanne. It was such a pleasure to meet in person and hear about what is happening at the conference. Then had a nice stroll along the beach before heading off to make an Orkambi delivery to my daughter, Sarah, in college. Took...

The only time may daughter did pre and post was when she was going through testing for a diagnosis (at 8 years old). Her test came out fine, no improvement with albuterol, and the tech says, "well, she doesn't have asthma". I let them know we were actually being tested because they thought she...

I had asked my doctor about this because my daughter's breathing test don't show an asthma component and I was questioning the need for albuterol. His answer was that in addition to being a broncho dilator, it also makes the cilia in the lungs beat faster to help sweep out the mucus. Don't know...

Have they done a blood IGE test yet? Testing the sputum won't diagnose ABPA as far as I know. My daughter cultures aspergillus but they have not treated it because her IGE levels are still low.

Yep, I'm in California so it is either find a way to repurpose or they go to the landfill. I will definitely check out some of the local pack and post places. That is a great idea!

So I searched the old threads, but was wondering if anyone has found a place to "donate" or recycle the styrofoam boxes that pulmozyme is shipped in. I have given away to friends and family, but we get 3 of these suckers a month and my garage in being over run by them! I hate to just throw them...

I agree with Aboveallislove. I wholeheartedly believe in symptomatic carriers, but 43% PFT seems pretty low to be attributed to carrier status only. Something else is probably going on as well. Get a referral to a pulmonologist at the least to have your respiratory symptoms evaluated.

Prior Auth went through, approved for one year. Now we are waiting for Accredo to finish processing the Rx. My daughter will be home from camp on Saturday, so hopefully we can get delivery by Friday so she can start this weekend. Edited to Add: Just got off the phone, delivery is scheduled for...

My daughter has only been on IV's twice, both times we tried orals first. I think it is pretty standard to try orals first unless the culture comes back with a bacteria that shows resistance to oral antibiotics.

I had heard something about the Carcinogen study was being required, but that is the only part I the rumors that I had heard before. The prescription information about Orkambi does mention that no study was done on Orkambi, but that studies were done on the components. I will copy and paste...