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I know this has been discussed before, but can't find the link. Are there any DDf508's on Kalydeco? In clinic the other day our Dr. said he thought it was worth a try for every DD due to the small subset that responded well in the study. He even went as far as to ask if we would like to be that...

We have this discussion every summer...are pools really any better than a lake?  I know that pools are treated and lakes obviously are not, with that said, there are still tons of PA and other bigger bacterias found in swimming pools. Just curious.<div><br></div><div>So the question, do you let...

We have this discussion every summer...are pools really any better than a lake?  I know that pools are treated and lakes obviously are not, with that said, there are still tons of PA and other bigger bacterias found in swimming pools. Just curious.<div><br></div><div>So the question, do you let...

<div>I know that there are some really healthy active people on CL, so thought you might be the ones to ask.  How do you stay active and survive the heat??  We have had some really hot and intense heat days here for about a week.  I have for the most part made our 5 year old stay and play inside...

We just finished our fundraiser on Friday. It was totally awesome, and far exceeded our plans or expectations. We raised over $12,000 and are super excited. God is good, and it was so good to see that so many people cared about our family and the many others that suffer from this disease...

Check out our video. There is something deeply therapeutic in making these videos each year. It is a chance to see progress, and feel like we are doing something to change the look of this disease! Here's to hoping and praying for a bright future for CF. Blessings, Tiffany <a target=_blank...

So, we have a great plan to do a fundraiser. My cousin is the olympic softball picture, Jennie Finch. She does camps all over the country, not to mention is pretty well known for her talent, kindness and beauty. So my question to you is where do I start with a fundraiser???? I have the...

Just curious if anyone has completed this trial using liprotamas? We are searching for information on another alternative for ezymes..this one sounds like it may hold some hope. If you could pm me I would really appreciate it.

Just curious what everyone else does about keeping their lungs clear on the 4th. We have smoke everywhere. It is hard to see due to the smoke let alone breath. I am a bit sad right now, because our little one and I are sitting inside (away from all of the families smoke). There is no way...

My daughter has been on pancrecarb for over 3 years. They are the only enzymes that really work. We tried others before this one, and finally got things cf-normal. Now...of course they are not on the approved list. We have been on zenpep for over a week. NOT WORKING!! The day after starting we...

My daughter has been on pancrecarb for over 3 years. They are the only enzymes that really work. We tried others before this one, and finally got things cf-normal. Now...of course they are not on the approved list. We have been on zenpep for over a week. NOT WORKING!! The day after...

Haven't seen Amy here for a while...just want to know that she is okay. I miss her fun, helpful and usually spicy hints. If any one can put my mind to rest, I would sure appreciate it.

We have had a really rough winter and have been doing 3 to 4 treatments almost all winter. AT the last clinic they said that we could probably drop down to 2 or 3. Then they also added pulmozyme back into our arsenal. I know hyper and pulmo. work very differently, but our clinic didn't seem...

You are the only ones in the world that can possibly understand how tired and worn out we get from this amazing fight of cf. I have a child of 4 with cf. We have had a really crummy last 6 months. The last round has been non-stop since Jan. with two almost hospitalizations- (but praise the...

Just curious if anyone ever eats while doing their treatment? (Other than the obvious risk of choking with food in their mouth.) Does anyone ever do it? With limited time in a cfers day, every minute counts. Lungs health and treatments are important and so is getting the calories in. Please...

Just had a few questions about azithromycin. We had a disapointing and sad appointment today the chest xray's showed some thickening in the lung wall. Then the pft's showed some obstruction (however child is very young so the pft's aren't super reliable yet, but still). Hate hearing that...

Just curious I keep seeing the commercials for the product Zicam to help with the severity of colds as well as the duration of them, has anyone had any sucess using it? I am a primary care giver and I have been sick. I have worn a mask and made sure to wash my hands after every encounter...

Hi, I have a child who just got off of bactrum about two weeks ago. Since that time her stools have been crazy and very frequent. She had this issue about a year ago, and the doc's put her on an antibiodic for the gi tract. However...they can not locate the name of it, and I don't remember...

We are thinking of getting a germ guardian. Does anyone who uses the eflow have one or use one? We used to boil the parts after every use and FoundationCare discouraged it because the heat was to intense. Plus it really began leaking a lot. So now we are back to alcohol but i am not...

<img src="i/expressions/face-icon-small-sad.gif" border="0">Just curious how common cf and celiac is? I was quoted 1 in 5 will have both. We have not had the best odds so far with other heath issues, so I wouldn't be to surprised. She is already allergic to everything under the sun... so...