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    For California Residents - GHPP and Medicare Questions

    I had GHPP for many years. THey covered everything related to CF. No Copays. Now my issue with regular insurance is that they charge me stupid Co-pays. I was looking to go back on GHPP for this reason. Now that Orikambi is available it seems GHPP does not cover this drug at this time. Big...
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    Almond Milk Weight Gainer Smoothie

    THat is alot of calories but many people do not want dairy. It makes them congested. Try making this dairy free.
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    Almond Milk Weight Gainer Smoothie

    Oh good, let me know what else, maybe I can make another version Does he have a gtube?
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    Tube Feedings versus "Blenderized Diets"
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    Tube Feedings versus "Blenderized Diets"

    I have had a g-tube for many years and without it I just can not gain weight. I also have been an advocate to use your g-tube to your nutritional advantage. I struggle like all of us but recently I...
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    To all the green smoothies drinkers...and anyone with pseudo!!

    I try to do low glycemic foods. Like squash, carrots etc. For eating sweets I use Coconut sugar
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    To all the green smoothies drinkers...and anyone with pseudo!!

    A nutribullet has the power to really mix that up. Look up Blenderize Diet. or a book call Complete Tubefeeding
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    The risks of cystic fibrosis diet

    Yeah good fats like mentioned above. The crap you find in candy bars, scandi shake etc is just junk food. Also watch out for the sugar and other "recommended" foods, they all cause inflammation. It takes 30 years for perceptions to change. So before we all died so young it did not matter what we...
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    Seven Dwarfs of CF. What one are you today!

    Seven Dwarfs of CF Wheezy, Sweaty, Junky, Greasy, Salty, Skinny and Stinky!
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    Surprising Results with Essential Oils! Give it a Go!

    How does the oil when rubbed on feet fight pseudomonas in the lungs? Somebody please explain, thanks
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    21 Day Nutrition Challenge

    Is everyone looking to gain weight or just eat better. I am looking to really make an effort to gain back lost pounds. My plan is going to consist of g-tube feedings, bolus of whole foods, nutrient dense and eat more times per day. Trying to get motivated to go back to the gym [ helps with...
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    What do you take with you when admitted!

    Here are a few things that are often forgot. 1. Big Box of tissues, those micro tissues are too small. 2. Plastic Bags to keep garbage in by bed 3. Bungie Cords to tie stuff to IV pole and what not 4. Power strip, to be able to plug all equipment into one outlet and for laptop 5. Nutribullet...
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    Email address for the fda committee

    Any suggestions before I send, tried to keep it brief Dear Committee Members, I am a 45 year old cystic fibrosis patient , in relatively stable health, happily married and working on starting my own business. Even though these last few years has been challenging I am feeling optimistic for...
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    Email address for the fda committee

    thats what i say exactly!
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    Email address for the fda committee

    Ok good, well put. It is hard for me to be wildly enthusiastic, I guess it is just dampend by my own heightened expectations. But last week at clinic we talked about if the drug does not go through. [I have been on VX-809 roll over study for 1 year], and I was like oh crap we need this to get...
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    Email address for the fda committee

    Curious to see how common this letter writing is to help get a drug approved, I dont remember this going on with Kalydeco. My concern is that VX-809 is only marginally helping and the cost is outrageous. If the drug worked excellently then that is enough to get the drug approved and not some...
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    Need quick advice from adults with cf

    Stomach issues and gluten I know you mentioned that your daughter forgot her meds for lunch and caused problems but once that time should of passed and still had issues. One thing that all should consider that have consistent GI problems even when you do take your pills is that you might have...
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    Cysteamine and CF

    Facebook group dealing with cystamine and cf,
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    G-Tube Advantage II

    G-Tube Advantage II We all are looking for a silver bullet for the treatment and cure for CF. It seems we need only a slight improvement in CFTR or other channel to make a difference in our health. Well we still need a good foundation for good health if we want to live longer and beat this...
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    G-Tube Advantage “Let food be your medicine and Medicine be your food” Hippocrates

    G-Tube Advantage “Let food be your medicine and Medicine be your food” Hippocrates For many years I looked at having to rely on a G-tube, to gain weight, as a negative thing. It seemed like a failure on my part for not gaining weight lazyness or just being overwhelmed with just having to...