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Oh wow. Thanks. I gave up too easily. Ha.

Unfortunately, I found this and it's in Dutch or something. :(

I have an Erapid nebulizer and it's not working right. Treatments are taking way too long. I wanted to try cleaning it with the easycare system but I can't find the instructions for it anywhere online. Anyone have them or can walk me through it? Also my Altera nebulizer for Cayston works...

I was on that combo for years. Never had blood in my stool. A bit of orange pee, bUT no blood. Call the doc.

I have Aetna and my pod haler was approved. I used their specialty pharmacy. What reason are they giving for the denial? I pretty much fought every month for even my nebulized tobi with my last insurance company. I did have to fight a bit for the Pod Haler. Some issue with the quantity. I...

Periactin (Cyproheptadine) question I searched the forum and couldn't really find anything that exactly addressed my question, so forgive me if this has been covered. I just started being seen by a CF center and now I am on a lot of new medicines and treatments. I wasn't diagnosed until I was...

Yeah, I would be interested to know. I've never asked my doctor and maybe I should next time I see him. Since I was diagnosed only a few years ago, I am sort of new to all of this information.

Good question. I'm not sure if it's the same or a different gene. I just know on my report that's how it's written d110h2. I was definitely asymptomatic as a child. I was almost never sick. I got pneumonia for the first time in my mid 20s. And then I'd get sick every six months. They found...

Just to echo what others have said, make sure you take your daughter to a CF clinic. I have F508 & d110h2 and I was never sick as a child. I was diagnosed when I was 30 after years of chronic infections in my lungs. While I was healthy for most of my life, I can't help but think earlier...

I was treated for MAC for a very long time. I did one stretch of 18 months, stopped for a few months and then I think I did another year. I am pretty sure my meds and the dosage was the same as what you've listed. My Ethambutal might have been lower. I tolerated the meds fairly well, but I...

Hello everyone, I am freaking out a little and I need some input. I am a teacher and my school district just emailed to announce that in January we're switching health plans from Blue Cross Blue Shield to Aetna. If I remember correctly from my old district, the University Transplant Center in...

I moved from Boston to Austin, but it was before I was diagnosed. I don't go to the CF clinic at Dell, but I have heard good things. I have a coworker whose daughter has gone there since she was a baby. They also treat adults. As far as insurance, to echo what others have said, Texas is...

I'm so glad this project is coming to fruition. I can't wait to see the finished product.

Not that I know of. In June I was hospitalized for psuedenomonas. That's the only thing I've been culturing lately. But my last check war in June.

Warning this might be gross for some people... my coughing the past few days had been getting pretty bad. It's now to the point where I cough so hard I'm throwing up. I just tried to use my nebulizer and had to stop because I kept coughing and then throwing up a little. It also happens when i...

To echo what the others have said, I was diagnosed at 30. I had bronchiectasis and chronic pneumonia. I went to doctors for ten years worth nof answers. Basically I would get diagnosed with pneumonia every 6 months. finally I went to a really good pulmonologist who dug deeper. My sweat test was...

Does anyone on here have an air purifier? Does it help? And which one do you recommend?

awesome. I have shared it to all of my social media and will continue to do so. best of luck to you!

I sent you an email. I love this idea. I am 37, diagnosed at 32. I would love to help in any way that I can.

I met my boyfriend online. While I didn't put it in my profile, I told him on our first date. This is something I generally did, mostly because I am not the sort of person who can hide things. I am generally honest to a fault. Also, because I was in my 30s, I didn't want to waste any guy's time...