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    Mucoid Pseudomonas

    It's a new baseline and time to enlist all the help you can for this fight. P.a. is extremely resistant to all antibiotics. Fluroquinolones are still effective to a degree and multiple antibiotic therapy using inhaled, IV and other delivery combinations have successfully eliminated substantial...
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    What does life look like after CF diagnosis?

    Don't expect the worst, just yet. At birth I was undersized and in 1950 this was worrisome. My CF is mild, sort of like a mild trampling under a herd of stampeding buffalo but the scale from goes from symptoms too mild or moderate as to escape diagnosis to newborn's who don't survive. Treating...
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    GI advice

    My apologies, I was writing without going back through your threads. I had lost confidence in my steel trap memory and "your child" was just lazy. I used it a couple times in the end and it bothered me. I had written both long posts on a Droid. I was still getting text messages in the wee hours...
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    GI advice

    A colonoscopy is aborted when a blockage is encountered or a prep failed to cleanse. I've probably had 20 colonoscopies and two were stopped because of mucus that didn't clear. The resolution of a scope is sub millimeter, as small the inside of the mint mark of a Denver dime. The pictures after...
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    GI advice

    For many CFers, GI problems define the major issues. Certainly this is my case, my lungs are fine but I've had GI issues my entire life. When this thread got started, Rebjane was in search of a new pediatric CFGI specialist. Good luck on that one, I've been looking ever since I was diagnosed by...
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    cystic fibrosis and criopreservation umbilical cord blood and tissue

    We paid to have my niece's last baby's umbilical cord harvested, treated and quick frozen about fourteen years ago. It was a sensible decision in my opinion, then and still today. "Ryan" has a supply of personal stem cells. My decision to plunk down $3000 plus an annual storage fee of ~$160 may...
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    Transplant

    Congratulations MikeinMT! And thanks for offering to speak (write) with fellow and future transplant patients. I'm saving this thread just for these questions. Scientists of my generation saw some of the first organ transplants and many, including me, worked on the problems and challenges of...
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    I probably need enzymes for medical brownies?

    It may be Enzo asking the question but I am convinced the same questions are of interest to a larger audience, but are too shy or cool to ask. Pot is just one of many subjects the younger readers would love an informed, non judging answer to this and all the stuff we used to protect them from...
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    Is it possible...or am I asking for too much

    Your husband has voted, no CF children, but I don't see anything saying he doesn't want another child. In one way or another, from IVF to terminating a pregnancy, all the current tools end up testing an embryo and keeping one or two and destroying those with CF genes. The importance of this is...
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    What is the best CF genetic test?

    A full amplified CFTR genetic test includes 1900 +/- mutations is what you want. Contacting the CF Foundation at CFF.ORG you can talk with your State chapter to find the closest approved CF center. I was seeing a pancreatologist when my CF test was ordered and he included tests for pancreatic CF...
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    I designed a side table to help aid in making our lifes alittle easier.

    A+. You have found your calling, I believe. The subtlety of material choices like fabrics that are elastic and the hammock pocket design are strokes of brilliance. It may take more than a hemmed fabric for the pocket edges to stand the strain and wear long term. Possibly reinforcing your hammock...
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    Phage against pseudomonas staphylocoque aureus

    There's limited phage therapy because the outcomes are not always predictable. From the bacteria's viewpoint they are at war with other microbes from yeasts and viruses to competing bacteria. Apex predators in the single cell world are phages so a bacteriophage would be needed to attack and...
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    gastrointestinal clean out?

    Simba's warning is potentially valid. PolyEthylene Glycol (PEG) is made up of ethylene oxide radicals. Ethylene oxide by another name was once called the deadliest chemical on Earth, dioxin (diaxin) is both mutagenic and carcinogenic. PEG's are so numerous that an entire sub-science of organic...
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    Welcome Ambry Genetics

    Cystic Fibrosis (CF) is the result of an error in a particular gene on both chromosomes. One copy of our 23 different chromosomes are inherited from each parent which means all the cells in our body have 23 from mom, 23 from dad for a total of 46. CF is an autosomal recessive genetic disease for...
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    Smoking Marijuana to breathe easier

    Enzo, I know the effect you're talking about. MM and its smoke cause some dilation of the airways as does albuterol in your inhaler. You have also smoked tobacco products and may have experienced that same dilation, or a feeling that breathing is easier. Albuterol is part amphetamine and part...
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    Smart pill bottle next generation

    This is a great idea! My assumption is that the narcotic or such is prescribed and it comes in that bottle with the instructions encoded therein. My experience is more geriatric or involving chronic pain and mental illness. The geriatric patients are often medically naïve and with a touch of...
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    CF & Sexual Performance? (NSFW)

    A healthy male produces almost unlimited semen, one ejaculation after another and so on, within limits. This points at a significant constriction or limited ability to make seminal fluid, possibly both. The ejaculate in our healthy male has some force or pressure behind it shooting vertically...
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    Does CF affect tears?

    Maybe you were visited by the Sand Man or Sad Man if you prefer. Yes CF tears are different. It's salt and your mucus or tear ducts are dehydrated and spent. If it presents a problem, buy some eye lid washettes. It contains soap and emollients that is formulated for the delicate eyelids and...
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    should I get tested

    Having genetic testing for CF probably isn't going to result in a CF diagnosis. Sinusitis with a single incident or infrequent lung issues like a pneumonia or hemoptysis, coughing up blood, seems to be more often CF carriers. CF is a genetic disease that in theory means that a Cystic Fibrosis...
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    Feeling Alone

    I am finally at an age where I've seen how relationships are tested. For some, the relationship doesn't even withstand the typical problems of life together. The stronger marriages are having a child or children and when parent's say nobody is in the slightest way, prepared for children. Many...
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