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    How did your decline go?

    I am scheduling an interview with a TX-Center, and I am at 37%. I think it is a waste of time with my FEV1 so high, but my physician and her PA are strongly urging me to make an appointment now. I've too have had my lungs bleed, one that put me in the ICU for 3 days. I am told that the urgency...
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    Who will join me in supporting Sarah Murnaghan?

    Are either of you two on a TX list? Perhaps my imagination is off, but with even a few tx-listers I feel sure there would be some national coverage, especially with the existing coverage. It is one thing to ask, it is another thing to put oneself in harm's way to bring attention to her issue...
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    Who will join me in supporting Sarah Murnaghan?

    I have an idea though because I am not yet on a transplant list I will need support from the adult CF community. If you are on a transplant waiting list would you list your name among others who, in protest and solidarity of Sarah Murnaghan circumstance, would/will put-off your transplant...
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    Beyond the first year of a transplant ...

    Knowing that immediately post-tx a patient is to stay away from fruit/vegetables and flowers, or things that can carry mold or bacteria. However, what about well beyond the transplant, beyond the first year? If I live on a farm/ranch would I have to move to the city? Or would I just have to...
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    Beyond the first year of a transplant ...

    Knowing that immediately post-tx a patient is to stay away from fruit/vegetables and flowers, or things that can carry mold or bacteria. However, what about well beyond the transplant, beyond the first year? If I live on a farm/ranch would I have to move to the city? Or would I just have to be...
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    inhaled levofloxacin

    I'm like SoyaSauce, I have considered just getting worse in order to avoid Levaquin. I too find myself in extreme discomfort when on Levaquin, this use not to be an issue but I understand the toxicity levels are reached after awhile taking it. It also takes me time to recover from it, up to 3...
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    Ibuprofen tto treat inflamation

    I put myself on my own Ibuprofen therapy years ago and never had a problem. I similarly felt a significant benefit to taking the Ibuprofen, however, as my FEV1 baseline score dropped into the 50%s and 40%s I noticed a correlation between hemoptysis and Ibuprofen. So I slowed down on the Advil...
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    Stomach Issues after Antibiotics?

    I take Bio-K which I purchase from Whole Foods or Sunflower/Sprouts Supermarket. I take one bottle twice a day for a week or two post-antibiotic therapies, which is a lot, but I figure mine is not your normal digestive tract given I have CF. Hope this helps!
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    Adults on Miralax can you help me

    I have Double-DF508, so I guess I have typical CF digestive issues. I too take Miralax and never have cramping and no quick urges after eating either. Where specifically is the cramping? Have you had your gallbladder removed? Do you eat fried or greasy foods? I get cramps from obstructions...
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    Transplant and working with animals

    Cbegley, which transplant center said never to have a cat post-transplant?
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    PFTs after transplant

    Is this typical? I too would expect FEV1 to go up <90% within two or three months. What are the chances that it would go up that high that fast? Thanks.
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    PFTs after transplant

    Is this typical? I too would expect FEV1 to go up <90% within two or three months. What are the chances that it would go up that high that fast? Thanks.
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    Transplant Anniversary

    Congratulations! What is your FEV1?<br><br>Thanks!<br><br>
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    Transplant Anniversary

    Congratulations! What is your FEV1?<br><br>Thanks!<br><br>
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    ADD Medications

    I am taking an Attention Deficit Disorder med and I find that it give me cotton mouth. This is uncomfortable as I don't like the sensation, but more so it makes me feel as though I am dehydrated, which as you all know in CF is not a good thing. If you are taking ADD meds which one(s) are you...
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    ADD Medications

    I am taking an Attention Deficit Disorder med and I find that it give me cotton mouth. This is uncomfortable as I don't like the sensation, but more so it makes me feel as though I am dehydrated, which as you all know in CF is not a good thing. If you are taking ADD meds which one(s) are you...
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    ADD Medications

    I am taking an Attention Deficit Disorder med and I find that it give me cotton mouth. This is uncomfortable as I don't like the sensation, but more so it makes me feel as though I am dehydrated, which as you all know in CF is not a good thing. <br /> <br />If you are taking ADD meds which...
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    Phoenix CF Center

    In a word, it "sucks". The Phoenix is in a perpetual state of infancy. They aren't the newest CF clinic, but they run as if they were. The doctors there are not necessarily full time CF docs. The clinic is run out of a pediatric "undocumented immigrant" clinic. In my opinion it is horrific...
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    Phoenix CF Center

    In a word, it "sucks". The Phoenix is in a perpetual state of infancy. They aren't the newest CF clinic, but they run as if they were. The doctors there are not necessarily full time CF docs. The clinic is run out of a pediatric "undocumented immigrant" clinic. In my opinion it is horrific...
  20. G

    Phoenix CF Center

    In a word, it "sucks". <br /> <br />The Phoenix is in a perpetual state of infancy. They aren't the newest CF clinic, but they run as if they were. The doctors there are not necessarily full time CF docs. The clinic is run out of a pediatric "undocumented immigrant" clinic. In my opinion it is...
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