Recent content by rmotion

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...

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

Oh good, let me know what else, maybe I can make another version Does he have a gtube?

http://www.amazon.com/Complete-Tubefeeding-Everything-tubefeeding-nutrition/dp/1470190222/ref=sr_1_1?s=books&ie=UTF8&qid=1438022648&sr=1-1&keywords=complete+tube+feeding

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. http://forum.cysticfibrosis.com/threads/35226-G-Tube-Advantage-and-recipes?p=911159#post911159 I struggle like all of us but recently I...

I try to do low glycemic foods. Like squash, carrots etc. For eating sweets I use Coconut sugar

A nutribullet has the power to really mix that up. Look up Blenderize Diet. or a book call Complete Tubefeeding http://www.todaysdietitian.com/newarchives/011315p30.shtml

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...

Seven Dwarfs of CF Wheezy, Sweaty, Junky, Greasy, Salty, Skinny and Stinky!

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

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...

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...

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...

thats what i say exactly!

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...