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This is to patients not covered by insurance. The vast majority of CF patients have private insurance or are covered under government sponsored plans. They are making money in the US AND helping people that are not insured (under insured). The problem with the UK is the single payer system...

As far as getting the extra nebs... We went ahead a bought enough nebs to last 2 days. It wasn't cheap, but well worth the investment. Pari's hypersal now comes with a neb, so we get one neb a month from that to help us stockpile for the next neb change. As far as getting 1 every six months...

I think it is a huge over reaction by the school. There is no way to limit a school to one person (or siblings) with CF. What would have happened if the school they wanted to transfer him to already had someone with CF? (This is assuming he does have CF and not just a carrier.) You can keep...

Thanks Jenny, She has been off the IV's for about 2 weeks now and I can see that it is already starting to clear up. We were using aloe gel with tee tree oil in it, hopefully it will clear up completely soon.

Last month was my daughters first time being on Trobra & Zosyn IV's and she had an acne breakout, mostly on her shoulders. I was wondering if it was the meds, or just being sick,or something else that caused it.

Our center does not do them routinely...there needs to be a good reason for it. My daughter just recently had her first bronch. Earlier this year was her very first hospitalization and she had to go in again about a month ago. During that hospitalization our doc did a bronch because the big...

I'd be interested in the acapellas for my daughter and husband (with bronchiectasis) if no one else takes them. But I don't want to hog the devices from someone else who is in a bigger need for them.

Just wanted to welcome you to the sight. I don't have any experience with B-Cepacia so I can't help you out there. I might suggest copying your post to the "Adults" section, that section seems to get more traffic and I'm sure there are some CF adults that would be able to answer your question.

If this is the trial you are talking about http://www.cff.org/Display/dsp_ClinicalResearchHTML.cfm?id=282&IDH=4244867&State=&advancedSearchOn=false&ageshow=&status=10&FEV1=&PSEUDOMONAS=&BCepacia=&PLT=&Therapy=&Char=&Keyword= CFRD is not mentioned on this information sheet. Although this is...

Jana, I don't know the answer, but you could repost this in the Family forum under Ambry Genetics (it is a sticky topic at the top of the page). Steve from Ambry comes onto the site an answers genetic testing questions.

It's great that your are doing so well, but it may not be the wisest thing to get rid of your vest. You may find that you need it in the future and may have a hard time getting insurance to purchase you another one. What have your doctors said? Do they want you to stop your treatments...

Wow, great numbers!

Wow that's great. My daughter has only had one round of IV's. For those of you who have never had a "tune-up", what are your PFTs?

No, I don't think you will get sick by the way you are cleaning your nebs. Maybe boil the water for 10 minutes first like fly30 says to be on the safe side. Are these the nebs you are using? http://www.alliedmedicalequipment.com/nebulizer-accessory/pari-lcr-d-disposable-nebulizer If so, are...

I see in your signature line your son has a completely different mutation than you carry. How sure are you that he has that mutation? Genetically he would have to receive one mutation from you, so he has either N1303k or f508del. If it has been confirmed earlier that he indeed has G411D also...

I didn't realize you were using the disposable type. What meds do you use? The disposable might be ok for albuterol & hypersal, but if you are doing pulmozyme or antibiotics you really need to get some better nebs. The disposable ones don't break the medication down small enough to get...

I don't know if I would rinse them off with the cooled water. Although technically there probably isn't anything wrong with doing it that way, it just extends the drying time of the neb. If you remove the nebs with tongs while everything is still hot, they will dry much faster.

My daughters first hospitalization was in January of his year due to staph (she does not culture PA). Her FEV1 had dropped from 116% down into the 90's. It had been dropping slowly and rounds of oral antibiotics were not cutting it. The IV's didn't seem to clear everything up, so after IV's she...

I believe most of the time the surgery can be done on an out patient basis. Generally, I think they tell you to expect a couple days of discomfort. When I had my g-tube placed I experienced severe cramping for about a week, which I was told was unusual. One thing to check out is if they can...

heatherottery: PA is pseudomonas aeruginosa. bubbleville: We have a germ gaurdian and it does heat up. We don't use this the sterilize, we only use it for drying our nebs. A few years back I believe someone ran a test to see how long it would heat for and at what temp. It was determined that...