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Thank you Love! So exciting.

Whoop whoop! ;) Will you be listening tomorrow (well today actually)? Please let us know if you hear anything noteworthy!

From your lips to Vertex and the FDA's ears J! Let's hope they move quickly.

Wow. :( Talk about scary. Basically any shred of privacy from employers could be stripped away. The real question is, what can they do with the information? What is the point of an employer having your genetic information?? Of course we all know that it is against to law to fire based on...

Hi again Jason! We recently moved back to Nebraska, but I did have BCBS of TX for about 2 1/2 years. It was through my husband's employer and was pretty good. I can't recall having a problem getting them to cover anything CF related. So to answer your question, yes, I think if you have...

Hi again! Sorry I somehow missed this question. I'm not sure how it all works with the vitamins. I just recently started using them for that after the dietician at my clinic told me about it. I had not known they covered vitamins. She had me order from MVW Nutritionals and they are CF...

You're more than Welcome Joe! Please let us know if any other questions come up or you just need to vent while you wait. And of course let us know how the next sweat test goes. :) Autumn

Hi Jeana, Were you below your baseline at your screening visit? Are you back up above 40 when you do PFTs in clinic? If so, I definitely think it's worth asking the research coordinator that you screened with if you can be re-screened. Good luck to you! Autumn PS. Can I ask which trial...

Hi all, Many of us are watching and waiting anxiously to see what becomes of the Affordable Care Act (ACA). As most probably know, today the proposed bill(s) to replace the ACA was rolled out. I was personally very relieved to see that some of the key provisions that protect those of us...

Hi and welcome Jreed, Firstly, CONGRATS on your new baby boy! How exciting! I'm so glad to hear he is doing well. Secondly, I'm glad to hear is that your doctors seem to be very on top of the situation (whatever it turns out to be, or not be). Unfortunately the majority of us with CF...

Hello again Jeana, Once again, no personal experience here. ;) Just wanted to mention that I have heard of others going through pulmonary rehab programs at their hospitals and having good results. I think it can help delay the need for transplant, and also helps keeps you stronger going into...

Hi Jeana, I'm sorry I don't have any experience with Celebrex, but wanted to ask if they have ruled out pancreatitis or gall bladder issues? I have had several bouts of pancreatitis, and also gall bladder issues that sound very similar to the pain you are describing. They pain was pretty...

I'm sorry Asia was discriminated against, that is so disappointing. But I'm so happy that you all found another school that can look at Asia and her abilities and merit, and leave CF out of it. I'm sure she will continue to flourish. I loved the video and being able to see you and Asia. It's...

You are welcome Big Monkey! I am sorry that you feel threatened by the clinic. :( That is not good at all for the doctor-patient relationship. I think threatening to report you over prophylactic antibiotics is pretty extreme. Obviously, cases of medical neglect do get turned over child...

Hi and welcome Bigmonkey! You did great with your first time posting. ;) I know it can be overwhelming, but you should always feel welcome to ask questions and chime in whenever. I'm glad your daughter is being seen by a CF specialist. I'm not super well versed on England's healthcare...

Oh good, glad we figured it out! I would have had your same reaction if I thought it said I had to be willing to change docs/meds/pharmacies. In addition to covering the prescription copays, they also cover many supplements and vitamins and some nebulizer handsets. Here is the list of what...

Hi Carisabo, I'm afraid I can't be of much help, but wanted to say that I'm sorry you are experiencing this. We heard of many people experiencing some pretty extreme negative side effects at the start of Orkambi. It seems like for many folks they subsided with time, but for others the side...

Simba, The CF grant through Healthwell is just a copay card program. They have absolutely zero say in what doctor you see, or what meds you are prescribed. I'm not sure where you found that info. Maybe for some of Healthwell's other programs that I'm not familiar with? I would definitely not...

Yikes Kenna, what a scary situation! I'm so sorry to hear it. I hope you're feeling much better! That is good info to pass along regarding power ports. Does he think the problem is specific to power ports, or just all new ports being made with different materials than the old ones? Otherwise...

Hi all! Hey, I plan on talking to our tax lady about this, but thought some of the folks here may have some good insight.. Today I received my 1099 Misc for a Vertex study I am currently in. This is the first time I've made enough from a study to receive one. Does anyone know if the...