lexisangels,
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<br />I was one of those people that was sick ALL the time. I cultured 3 to 4 strains of Pseudomonas, staph (sometimes MRSA), MAC, etc. I was IV meds more and more often plus nebbed Tobi nonstop (not even every other month). My FEV1 dropped as low as 32%. It got to the point I coughed up blood every day. And I never felt well.
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<br />My doctor whom I started going to 12 years ago takes a very different approach. I have not been on IV meds in 12 years. Twelve years later, instead of my FEV1 going down, it has gone up -- 54% which may not sound great to you, but I aquired extensive lung damage including bronchiectasis due to my previous doctors' care (and yes top doctors). Prior to this doctor my FEV1 declined every year. I couldn't even walk one block. Now I exercise, taking classes with the normal people of the world. <img src="i/expressions/face-icon-small-smile.gif" border="0">
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<br />My doctor does NOT believe in tuneups or routine bronchs. Bronchs especially expose patients to pseudomonas, b. cepacia and other bacterias. You will notice that most of the time they don't yield any result that a CT scan(also should not be routine) or a culture yields. And I am NOT saying bronchs are never indicated. But routine, absolutely NOT. To go in there and look around, while exposing a patient to new bacterias and other dangers, does not work for me. I have NEVER had a bronch. My doctor has had extraordinary results without doing them as a rule.
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<br />So what does she do that the other doctors do not? CF people have hypersensitive lungs. Which means that due to certain triggers like allergens, irritants, and chemicals, their airways swell due to inflammation. This why CF patients are on ASTHMA medications. Bronchodilators, prednisone, etc. Yet most doctors do not believe their patients have asthma or do not address the asthma component that is there.
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<br />The closed airways trap mucus which causes inflammation which leads to the exacerbations we know so well. Sometimes the exacerbations are treated with antibiotics, when the person doesn't even have infection. Which leads to more and more rounds of antibiotics. If inflammation is not treated, it turns into an infection also leading to antibiotics. BUT because the inflammation is not dealt with, as soon as the infection is over, the swollen airways again trap mucus and the cycle continues.
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<br />I don't do tuneups because I don't need them. I treat the inflammation -- that is get to the source of what is causing it first. This is done with allergy testing, asthma testing, blood tests and then doing detective work to figure out the triggers. Then avoiding them. You have to get chemicals, fragrances, carpets, preservative and chemical laden foods out of your life. Add air filters, hepa vacuums.
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<br />My doctor makes sure I am on the right asthma and anti-inflammatory meds, and adds supplements like fish oil, plus others.
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<br />If I do get an exacerbation after a trigger (I ALWAYS now know what causes mine) I have to do extra treatments as prescribed and if I get worse I might get a cortisone shot. On rare increasingly rare occasions and pretty much after coughing up blood continuously, a culture, an X-ray, a blood test maybe, then a simple course of Tobi for 2 to 4 weeks. Previosuly I had been on Tobi so much I was resistant for years. By NOT using Tobi, sensitivity returned.
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<br />At the present time, my last several cultures are not even picking up ANYTHING. I am not special. My case has had the same history as most of you. And I am not perfect. Just better than I used to be and off of the antibiotic merry-go-round.
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<br />One last word to Lexisangels--- RVS does make the lungs more sensitive and so your daughter in particular would benefit greatly by dealing with the asthma and allergy component of CF.
