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comorgan, I’m not a doctor and I don’t have any experience with Orkambi, but I was forced to suddenly stop taking Kalydeco. This past year I had to suddenly stop taking it for five days following emergency surgery. I had been taking it for over three years, and it was a life changer. After...

With D1152H you should definitely look into getting Kalydeco! Are you going to an approved CF center? If so, I'm a bit surprised that you haven't already tried it, since it's been FDA approved for D1152H for almost a year. Kalydeco has been a real life changer for me and others with that...

I attributed not constantly fighting lung infections to my unwanted weight gain of about six pounds after staring Kalydeco almost four years ago.

Looks like there are no accredited CF centers near Naples. You should go to the Cystic Fibrosis Foundation's web site and look under CARE. Enter your zip code and the distance you would travel, and they will list all the accredited adult and pediatric CF centers within that distance.

After retiring and going on Medicare, I was quite surprised that home IV was not covered. They did cover the cost of the antibiotics, the blood testing, and the home nursing. It was the "dispensing "pump" that was not covered. It ended up costing me about $35 per day. I found this more...

Cfwarrior86, I see your mutation, 2789+5g<-A, is a Class 5 with some Residual function. My mutation, D1152H, is a Class 4, also with Residual function. Even people with the same mutation appear to respond differently to Kalydeco - so I can only give you my experiences. My reaction to it has...

BreeAlysa, It's a 106 page document that contains instructions in about 25 languages. If you look on page 9 you'll see the English section.

BreeAlysia, If you Google: eflow and easycare you'll find links to a PDF file containing instructions for using the Easycare to clean eFlow nebulizer heads. Here is a link to the file. You can copy and past it into your browser...

My advice is to try getting Kalydeco if you possibly can! I’ve been very fortunate in that my CF center prescribed Kalydeco for me off-label over three years ago. It’s been a real life changer. After 60 years, my cough and thick mucus production disappeared! It took less than a day to start...

Amber, Your artwork is as beautiful as your soul. You deserve to win for multiple reasons. Good luck! By the way, can we vote more than once?

If he's does hypertonic saline, try doing that in the morning. Since using Kalydeco I rarely can bring up anything except right after nebulizing saline. Days that I have a CF center appointment, I collect a sample that way in the morning. Wishing you all the best.

Snailj12, Let me add to what "emason" said. If you have any productive cough where you bring up thick mucus you should look into getting Kalydeco now. Don't wait until you develope lung damage. Kalydeco has done wonders for some of us with Residual Function mutations. Also, as others...

Looks like FDA approved Kalydeco for the additional Residual Function mutations!!! https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm559212.htm

I can't over emphasize how this program can really benefit some of us with off-label Residual Function mutations. Over the past years I've spoken with CFers who are unable to get Kalydeco. For some it was their insurance provider. Others had CF centers that didn't even want to try! If this...

I've been prescribed outpatient antibiotic IVs from three different adult CF centers in the New York City area. Similar to "shay" the initial treatment was always for 10 to 14 days. On rare occasions when additional treatment was indicated, the antibiotics were always changed, and 7 to 10...

Amber, Mazel Tov! Your screen name couldn't be more fitting. You do indeed have a Beautiful Soul. Your posts are usually real uppers in a place where they are often badly needed. You're always trying to find the positives in trying situations. It not only enhances your life, but also the...

I don't know what type of eflow you have, but every one I've seen has a built in chamber that holds 4 AA cells. I get at least 20 "treatments" from one set of Costco (Kirkland) AA alkaline batteries.

It's my impression that all eflow nebulizers run off 4 AA battery cells in addition to the external AC power unit.

The article is also likely relevant to those with other Residual Function Mutations who are taking Kalydeco. It's a good description of my experiences with it.

For me it means reducing other CF treatments. I did stop everything except Kalydeco for close to a year, but have since resumed some other drugs. Within a short period after I started Kalydeco, it almost felt like I was "cured". After doing so well for about a year, I spoke to my doctor about...