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As long - how interesting! What other changes have you noticed with Orkambi?

Hi Cam. I hope you're on the mend soon! I'm curious....did the docs take you off Orkambi? Blessings......

Yay! A boiled spacer. Amen. Remember though, washing with soap and water does in fact kill germs of course. But in my travels I've gathered that this PRE CLEANING stage is essential because it eliminates any debris......such as sputum, peanutbutter, dirt, whatever ..... under which...

AboveAll, don't stick your already sore hands in detergent. Don't make this complicated for yourself. Just fill a bowl or plastic container with soap and warm or hot water and let the Vortex sit in there 15 min per instructions. Rinse. Place in boiling water 5 to 10 minutes. Air dry. Voila!

AboveAll - I just saw your questions re using the steamer pot - sorry! I wouldn't use it frankly. The CFF guidelines talk about disinfection by boiling for 5 minutes (which would mean in the water itself), or two methods which I suspect rely on steam - the dishwasher or electric steam...

Yes, Dot. The entire barrel seems to be metallic. I believe the metal lining was in part designed to avoid the problem of static buildup which attracted the particles in the medicine itself and resulted in less than optimal delivery of the med to the lungs. And the hard plastic type material in...

Yes Ank, most spacers will distort when boiled. But the Vortex can be boiled. That's been confirmed by Pari, and is in the materials for care of the Vortex in foreign countries. And the instructions in the U.S. do not state that it cannot be boiled - a warning that occurs in the instructions...

Here's the link to Vertex's presentation, including the oral presentation to go along with the slides. It is under Investor Event at the NACFC on October 9, 2015. They do see to say that the triple combo inludes all d508F heterozygotes. In other words, it includes anyone who has at least one...

Successful boil with Vortex: I received the Vortex spacers today. *I first soaked it in hot soapy water for 15 min. per the instructions and then rinsed with tap water. * Then I put it in a pot of boiling water to which I had added my usual two or so tablespoons of vinegar. *It sank to the...

Similar concern here Liam. I'm trying to determine Vertex's definition of minimal function. Class I does not produce any CFTR. Class II produces little. But they aren't talking about minimal production, they are talking about minimal function. Clearly Class II is in the mix, since that is...

Cam - I'm sorry to hear you're headed back. But I wonder if this isn't simply related to starting Orkambi. Your symptoms sound quite typical for many of those who start Orkambi especially when their lung function is on the lower end to begin. I'm hoping that's the case and they get you...

Saint, your descriptions are so expressive. I hope you write for a living or consider it! It's like the other day I read a passage out of a good novel to my 10 year old. Of course he is used to the lame books written for 10 year olds. When he heard a good piece of literature he said "Wow. I...

Yes.....SaintOffeon. And I'd love to see more posters who are doing well on Orkambi tell is all about what they went through in the beginning as SaintOffeon has done. It can make such a difference.....

Heaven Bless, Saintoffeon. Thank your pulmonologist for years of ....... whatever he's done. Tell him - or not - that you're following his other CF patients to an approved CF Center so you can make it to the age of his other patients. Get thee to an adult CF Center now. Call them tomorrow and...

I'm glad you have a great pulmonologist. But coordinated care can really step up your medical care standards. Here's a link to the Cystic Fibrosis Foundation website"s locator service for Approved Care Centers. https://www.cff.org/CareCenters.aspx?id=2397&page=1&state=650 If the link...

Saintoffeon -Do you have a reasonably close Adult CF Center? And a regular everyday doc, like a family practitioner or Internal Medicine Specialist? They would coordinate referrals, diagnose and treat everyday problems. They can also help run interference with your pulmonologist when you're...

AboveAll - was this a new spacer? Or the first one that had already begun to deteriorate?

Thanks Stephen. Your explanation of a double boiler helped me a lot! The fact is we need to be able to boil this dang appliance without worrying about it. If we have to use something other than just a pot with water, I'm afraid it's becomes ridiculous and not nearly as useful. Bless AboveAll...

You're very welcome, Ethan.

Hi Ethan. Here's a link to the FDA Approval History. Click on the link for Summary etc and it should download the document I believe you've asked about. http://www.accessdata.fda.gov/scripts/cder/drugsatfda/index.cfm?fuseaction=Search.Label_ApprovalHistory#apphist