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    Want some TOBI?

    We may have some that is just barely going out of date, but the manufacturer says its probably good for a year. It is my understanding, also, that it doesn't really need to be refrigerated 100% of the time, so depending on where you are, it could be mailed with just a little blue ice. Contact...
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    Beth Sufian's guide to insurance

    Is it just me or is anyone else out there terrified of their children turning 26 with no job that covers them? I have one 25 y/o son w/cf and he will never be able to afford all the co-pays and struggle with all of the insurance clerks, pharmacy "managers" and the CF center bureaucrats that...
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    absolutely NEED help with treatment compliance

    Excellent thread! Compliance has been a problem for both of my sons (22 and 25 w/CF). When they were little we gave them absolutely no choice. It was never optional no matter what. Then when each of them moved away they stopped. Each of them got sick and ended up losing weight, losing lung...
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    Disaster hospital stay

    Terrible story Jshet MY GOODNESS!!! As I was reading your story, i wanted to know what actually caused the bleeding? Was it the surgery? Was his stomach filling up with blood because they made a mistake? And by the way, excellent advocacy, Jshet, " I told them to leave the pump off."...
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    Cystic fibrosis patients could soon benefit from breakthrough small-molecule drugs

    article from Chemical and Engineering WHY ARE YOU POSTING THIS NOW??? Is there someone on this list who works for VERTEX? This is from 2008. im
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    Therapies and Motivation

    Hannah / try mixing it up. Alternate vest & flutter & CPt & acapella. Try doing night treatments before dinner so you don't have to do much before bed. Try exercise instead of cptsometimes. But don't stop! You will getusedto it. You are still young and can form lifelong habits now, later it's...
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    nocardia - to bloggymom That should do it, it will kick it out. This is IV? Synthetic penicillins will wipe out gram positive bacteria. After you get better probably a good idea to do a maintenance med for a little while because it is very hard to knock out nocardia right away. Where do you...
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    nocardia! Both of my boys have cultured it on and off for years and years. Minicycline and doxycycline have both worked on and off. Bactrim (septra) has worked for some people, and finally, if those fail, linezolid will knock it out. Problem with that though, is that linezolid can have bad...
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    Failure to thrive! OPINIONS PLZ

    breastfeeding and CF Hi Dowling, Just a little more information (like you need more!) : There is a way to supplement AT the breast. You can keep breastfeeding and with a teeny little tube (#5 french) you latch the baby first, and supplement with a bottle of formula hanging between your...
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    20 Weeks Pregnant and found out baby has DDF508 CF - What to expect, and what to do?

    Found out baby has CF / 20 wks pregnant Hi Doug - Well, I read through most of the posts. I have two boys with CF, 22 and 24 y/o, both double delta 508. They had absolutely lovely childhoods, no hospitalizations at all until after 12 years, and they weren't all related to CF! One through...
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    Career Path and CF?

    21 y/o w/cf and career path First of all, it is a clear violation of the Americans with Disabilities Act to discriminate against you because of your cough. (Not that you want to stay at a call center.) There are lots of options, I agree with everybody, but you really need to get some specific...
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    I really just need general advice on what to do with myself.

    Thanks for the update Domv06! Its great to follow what happened to you. Please let us know how the ER visit went too. So, are you saying that the local CF clinic arranged for you to come to the ER so that you can get care, essentially, from the CF team but in the ER? That's awesome! Great...
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    I really just need general advice on what to do with myself.

    i really just need general advice So What happened DOMV06? Did you find a doctor? Did you call your old CF center? My kids both cough up blood every once in a while, especially my 22 y/o who has some liver involvement. Do you have liver problems? They can be treated, not to worry! But you...
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    Newborn just diagnosed and I M FREAKIN OUT

    newly diagnosed baby Alright, I rarely post, but I don't think anybody mentioned breastfeeding. Are you breastfeeding or breast-milk feeding Dowling? Its a great way to provide immune protection and avoid constipation for the baby and nobody else can do it. Just thought I'd add my .02. Both...
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    22 y/o coughing up blood, CF & CFRD & newly living away from home.

    I'd appreciate any thoughts. My 22 y/o son apparently is healthy, but suddenly started coughing up blood at school on Friday. He is living with new roommates (grrrrr) and away from home for the first time. He says he feels good. He is eating, taking his meds, doing treatments, but resisting...
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    stockpiling for civil unrest?

    Oh for goodness sake. Seriously? Guns? You should be frightened of the insurance company denying your prescriptions.
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    throwing up with cough

    Oh yea. Both my boys have thrown up from coughing. They are now 22 and 24y/o, and it isn't so bad. Probably they have both learned to read their bodies better. For example, since it turned out that they both had esophageal strictures, smaller bites helped. Also, when there is an...
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    How do i deal with bullies at school that make fun of me for haven cf

    Hey CLystal! Have your dad take a day off work, have him go to school with you, and have the bullies called out of class and talked to by your dad, you and a friendly teacher. My son was bullied when he was 9 or 10, I went to school, (his classroom was a portable), pulled the kids out of the...
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    Possible new way to fight lung infections

    Where do we read about it? I am willing to go to the CF clinic in Dallas and Denver. Can a person just "take it"? Orally?
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    stockpiling for civil unrest?

    I totally 100% agree!! My very elderly parents spend the bulk of what little brain power they have left paralyzed with fear that they get from certain TV stations. They used to be active, objective and happy, and now they are racist, fearful and suspicious and hateful. TURN IT OFF!