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We have the Respirtech Encourage system, but the manual doesn't say what these numbers mean. I really never looked at them. But, my guess is that 228:43:10 is the number of hours on the machine. My daughter has had her machine for about 7 years and that number shows 2484:16:31! My husband also...

Went to clinic yesterday (Kaiser in Los Angeles) and the doctor was ready to fax the Rx to the specialty pharmacy. I was not ready to pay a 10% copay. They did not have any of the Vertex GPA information so I have no idea what the copay assistance will be. I had brought these enrollment forms to...

I think we crashed the Vertex website trying to get more info....lol

I'm sorry they took this long to give their opinion. I don't have any personal experience with it, but if you search there are threads out there on this general topic. Like this one: http://forum.cysticfibrosis.com/threads/11236-health-care-careers/page2?highlight=nurse%2C+job%2C+career I know...

I think it is good enough to run Albuterol and Hypersal, but not powerful enough to use for Pulmozyme or antibiotics. We don't use the battery power, just use it plugged into the "cigarette lighter".

Amen to keeping up on nebs being draining. Since I am the parent and not the patient I don't have the same daily schedule to maintain. I think getting disposable nebs and taking a break from the cleaning is a great idea. It gets your treatments done without creating more work. I will have to...

Years ago my brother worked for a company that self insured. He was in management so he saw the bills that came through. My sister took one of their kids to the ped. The bill came through for all three of their kids visiting the doctor. He only caught this because it was his own kids and knew...

My daughter has this also, a white patch in her palm. It sometimes goes away, but don't know that we did anything different to make it go away. My thinking is that it was just sweaty palms that was keeping it "wrinkled". Maybe during times they are less sweaty it goes away? I just went and...

I am no computer genius, but want to point out something I heard/learned long ago. You can't trust the "754" people have read that post. There are "bots" out there and the skim the post for info. That is why many people when giving out there email address will write it out like thisismyemail at...

My husband has bronchiectasis and is a carrier of dF508. His doctors felt that his carrier status had some effect on his condition. He is basically on a CF breathing treatment plan...albuterol, hypersal, pulmozyme and vest!

I never wash the tubing. Our daughter just removes the nebulizer and lets the compressor continue to run if there is any condensation in the tubing. Otherwise we just use a new tube.

I was just reading your other post. This is crazy, she needs to be referred to a CF clinic to be evaluated. I think with 3 elevated sweat test...all over 60 which indicates CF, she should be approved for the full sequencing genetic test. CF ican be such a complicated diagnosis that she really...

Yes, probably only tested for 32 then. The full sequencing test costs a couple thousand dollars to do so it is sometimes very difficult to get approved.

But unless they had the full sequencing test done it is still possible that he has the gene. You need to find out how many mutations they tested him for. There are over 1800 mutations and most doctors only screen for about 100 of them. And also curious how you know his mother does not have the...

first question: if the parent has the gene but no signs/diagnosis of CF is their gene mutated also? Every one has 2 Cftr genes, one from each parent. Both genes would have to be mutated in order for the person to have CF. That is why each parent can have one mutated CFTR gene and not...

I would call your clinic and see what they want you to do. Maybe they will call in a prescription for you and/or order a chest x-ray. That is what we would do if we thought it could wait a few days until we can get the clinic. If it feels more urgent than that, you may need to head to a local...

I don't know what airway resistance is, sorry. But the 25 - 75% is just the name of the score for the middle part of your blow on the lung function test. I think they measure your exhale for 6 seconds. The 25-75% measures the amount of air exhaled from 1.5 seconds to 4.5 seconds. The FEV1...

My understanding is that the FEF 25-75 is what you are able to blow out during the middle of the blow (the middle 50%). I've been told that it is an indicator for the smaller airways and the FEV1 is an indicator of the large airways. At least with my daughter if her 25-75 drops it indicates she...

I still don't understand why it is legal for the employer to know who are the heavy insurance users (they may know anyway because of time off of work). I know they can't lay you off and tell you it is because you are costing too much in insurance. But they can think of another "legal" reason to...

Oh wow, lung problems, GI issues, early osteoporosis and 2 positive sweat tests! It does sound like CF would be a probable diagnosis. It does not make since that he said you need one of the "common" mutations to have CF; 2 uncommon mutations would cause CF also.