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Thanks for your words of encouragement saintoffeon. I have no intentions of quitting Orkambi, just wanted to describe my experience. As stated I woke up this A.M with NO TIGHTNESS in chest unlike the previous four days. Good luck and hope you continue to do well. I did not want to post until I...

This is day five for me doing 1/2 dose of Orkambi because my Fev1 is 25% with FVC 100%. Day one and two were very productive cough much more than normal. Within two hours of taking first pill I could tell there was a significant difference in the viscosity of my mucous with increased productive...

I was diagnosed at age of 12. Now 67 soon to be 68. Live every day as we all should, as your last. Enjoy love and forgive. I have never thought of my self any different as compared to others. I have seen close healthy friends one yr. die the next. We all will never escape death. In the big...

Having a higher psi is good for getting done with neb. rx fairly quickly. For me being retired for the most part take my time and try to get as much thick mucus out, takes about 1 1/2 for each treatment. In my opinion being faster is not necessarily good when it comes to nebulizer treatments for...

Great Idea for posting about why you stopped taking Orkambi. I have been approved by my ins. comp. to take Orkambi. Will start the first part of Nov. because I have a couple trips planned and do not want to start this drug while traveling. My current Fev1 is 28% and my FVC is 100%. I will let...

I have been using Devilbiss Pulmo Aide Compressor/Nebulizer along with the Pari LC nebulizer for many years and have been very pleased. The nebulizer is a real work horse with no problems. The nebulizer cost about $90.00 but will last for years. Suggest that you order filters for nebulizer at...

I would like to read the FDA report also. I considering Orkambi Fev1 28% and FVC 100% Thanks

Agree the cost of this drug is unsustainable for insurance companies. I might benefit from this drug but some what concerned about what it would do for my insurance plan. I am insured through my former employer which self insures which has about 3K employees. I understand there is cost with R&D...

Congratulations!

Florence Mississippi a few miles south of Jackson Ms.

Orkambi sounds like a great drug for us delta F508 folks but the cost from what I understand is some where around $259,000.00 a year. This is crazy. This will cause our insurance premiums to go out the roof. I thought Cayston was exp. but this is robbing folks financially without a gun. There...

Orkambi sounds like a great drug for us delta F508 folks but the cost from what I understand is some where around $259,000.00 a year. This is crazy. This will cause our insurance premiums to go out the roof. I thought Cayston was exp. but this is robbing folks financially without a gun. There...

Orkambi sounds like a great drug for us delta F508 folks but the cost from what I understand is some where around $259,000.00 a year. This is crazy. This will cause our insurance premiums to go out the roof. I thought Cayston was exp. but this is robbing folks financially without a gun. There...

Hello Worried Mom, I understand your concern. Exercise, hydration and being compliant with neb. rx. I presently neb. Cayston and alternate monthly with Colistimethate. Can not neb. Tobi, did it for over 10 yrs. but started having bronchospasm. I am a retired Nuclear Medicine Technologist. I am...

Most definitely, I go to gym three times a week. Get my heart rate to at least double that of my resting rate.

Yes works, great, mine is $25.00 copay.

Hello young lady, congratulations on your engagement. Do not know if I can answer your questions but fire away. Take care and enjoy life!!

I would not brush it off! Smile and tell them thank you, doing well, glad to see you're still healthy too!

Zyvox comes in pill form now, I believe.

There was a statment on a previous post regarding blood pressure medicaton and CF people at our age and CF geezers. When I was was younger, I thought 65 was old, now that I have obtained that age, does not seem that old now. I was 12 when diagnosed with CF. Live in Ms. USA Thank you for those...