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    Just Married! (Pictures included)

    Looks to have been a gorgeous day for a gorgeous bride. Groom quite the handsome prince. Congratulations. Sorry for late reply. Peter
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    Yale Scientist use gene editing to correct mutation!

    This primer link isn't too long or particularly complicated about this kind of technology, but by no means complete.Gene therapy - Better Health Channel. Gene therapy - Better Health Channel
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    3 Year Old Just Diagnosed - Help!

    Welcome. You've come to the right place. Many will be answering you shortly. This site has been here since 1996. We'd love to know how you landed here? With all the advice and information you'll find here, don't think your experiences aren't of interest to everyone here as well. Besides your...
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    Who do you see when you can't get to clinic?

    Try wrapping a wide elastic band around rib area of pain. It could be an intercostal muscle strain, costo-vertebral joint, costo-transverse joint, diaphragm strain (it is a muscle) which a competent physical therapist with manual skills might be a proper solution. Often moist heat using a wet...
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    Need to learn more about End Stage CF (Supporting a Friend)

    If you Google Texas Medicaid this is a quote printed in one article from August Texas law makers' deliberations. "Texas leads the nation in uninsured residents, with 6.4 million Texans, or nearly a quarter of the population, lacking health care coverage". Standards very, so looking elsewhere has...
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    Vertex Reviews Recent CF R&D Progress at NACFC

    It's important for us to have a scientist keep track of this complex information with the educational background to explain it to us. Thanks Chris.
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    Anyone else HATE dealing with insurance?

    Sometimes I come up short in meds. The pharmacist will always give me some coverage until dr re authorizes. If you are covered and have the Rx, talk to the head pharmacist. Their job is your health and in some states can prescribe when doctor isn't available. They should give you coverage.
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    mama - possible CF - Question

    Hard to imagine persistent shortness of breath without low Po2 levels. My doctoring is in NYC Cornell. My ENT told me recent research may reveal "cf genes" in a lot more people than the healthcare field would expect. He even thinks my chronic respiratory may be CF related. There is some x-Ray...
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    Wife Coughing up Dark Brown Chocolate Colored Mucus!

    I am a healthcare practitioner and no pulmonologist should accept "I don't know" as an answer to this. The work up clearly can see RBC cellular debris in the sputum. I am quite confident the responders are correct from their multiple experiences. Any physician who let's you/your wife walk out...
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    Trouble dosing creon help!

    Did you go to It has a help link on home page but you have to fill out their verification form. They may have someone to advise you of that. Also there may be some well qualified dietitians at cf centers (possibly even yours) to give advice.
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    Airway Surface Liquid or ASL could be key to treating CF

    This provides important perspective, meaning point of view and direction of thought.
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    College and Health Insurance

    Not To be potentially irritating but have you explored to see options of where schools are. You may find some presumptions are in error about your daughter's possibilities. Possibly some of the universities have resources for students with chronic conditions. Maybe through their...
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    If you get to heavy weights and you haven't been coached, the Canadian Olympic Weight lifting team (maybe in the 70's) many herniated discs and critical weight lifting errors. Do not know stats of CF (DD508) with lumbar pathologies, but if significant power lifting, could be worth a thought...
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    CF and discrimination?

    I have a small business (less than 50) and I think 90% of employers know a valuable employee when they employ one and also the cost of "retraining". All employers allow for "acceptable illness" but small firms may not do well if staff is too often short (which always happens with vacations). So...
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    Pain in belly during pt

    Look up diastasis recti, to familiarize yourself with picture anatomy and terminology. it is a "tearing" apart of the middle membrane of your rectus abdominal muscles. It attaches to the pubic ramus. You may also have pulling at its attachment such as periostitis(or similar reason), or an...
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    Is it illegal to reuse an "outdated" prescription?

    It is illegal to sell or share with anyone else. Otherwise you may take if prescribed. Some pills have a shelf life and "ingredient(s) can denature and become neutralized. Expired meds should not have adverse affect but could have no intended efficacy past expiration date.
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    Jobs for people with CF?

    Of course you need to consider the air quality for whatever you do. If you do not have a regular exercise regimen you might like a physical job where lifting or physical stamina requires lung function. At first that may sound contradictory. If you look at the government labor statistics web...
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    Sleep Issues - Is This Common with CF?

    Is your heart rate normal or more rapid than you expect? Low iron sounds like a good thought (blood work). Also forms of depression can cause sleeplessness or insomnia. Not a general clinical depression but some issue a psychologist could help reveal. Many people under rate psychologist help...
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    Smart pill bottle next generation

    Think of all the authorized "monitors" the pill bottle info can go to. A computer profile monitor, cross check with blood, BM, saliva, or breath home analyzer, other healthcare professionals, family members (support group - stakeholders for a specific individual), social worker(s), even...
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    Care outside the clinic

    Hi Wheezey. I think in your particular circumstance, seeing your local pulmonologist, a remote system for PFT checking might be sufficient. MIR make some quality varieties but so do other companies. That way you can update your doctor daily but still keep quarterly visits according to his...