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Have they done anything to treat (or even mentioned) inflammation? Even when I'm not having an exacerbation inflammation is a huge issue for me and can lower my lung function superficially. Have they tried him on any prednisone or anything specifically targeting inflammation?

I've been culturing pseudo for years and never, ever have white/clear sputum even after rounds of oral abx or IVs. It gets lighter and maybe more yellowish but the color never goes away completely to be "healthy" mucus. like Oboe said i would definitely finish your month of cayston. I can't take...

I go to MGH as well. the team there is awesome. I've found that sometimes home is better for me if the only thing i have to do it take care of myself. I don't love the hospital food and usually end up losing weight, then the dietician gets grumpy with me hahaha. I sleep better at home, eat...

I remember you! it's been so long! there are still people around that have been here for a while that i'm sure you'll run into :)

I'm pretty sure it is! It appears to be exactly the same as the "normal" amazon besides the donation aspect :)

Amazon just (or i could just be really behind) launched a new site called Amazon Smile. you can shop through it just like you would normally on amazon.com but you can select your favorite charity to have a portion of the price of your purchase go to that charity. CFF is on there as well as a few...

I grew up in chapel hill NC and now live outside Boston so we did the opposite of you! I was originally diagnosed at duke and then my doc there retired when i was 3 or 4 and i switched over to chapel hill where i was seen until about 7 months ago when we moved (i'm 28 now). Both are excellent...

Hi there, i'm 28 years old and have the same mutations as your daughter. i would seek out another cf clinic immediately--is the one you're currently at an accredited center? Though a few of the people i know that have these mutations are pancreatic sufficient and don't have severe lung...

I know there were some studies done (or initial small trials showed a need for some studies to be done) regarding the affect of menstrual cycles on lung function but i don't think that low estrogen specifically was an initial finding, though i could definitely be wrong about that. google cf and...

Hey, if you search the forums for "gluten free", "dairy free", Paleo or Primal diet, and Weston A. Price diet you should come up with many threads about gluten free diets. There are quite a few people on here that follow a gluten free (or close to free) diet and love it. I personally follow the...

I know this thread is older but I just found it today...I crossfit and have been for about a year. It's one of the best workouts I have *ever* done. It's hard, no question, but can be modified for any fitness level and ability. The crossfit gym I used to go to had people from teenagers all...

I buy jeans at Forever 21. they are not made for longevity (quality is not the highest) but I've washed mine multiple times and they are fine. they also only set me back $10.80 so no complaints. they are thin denim with lots of stretch including in the waistband and lots of different...

Hey Jennie, I have the same two mutations. I sent you a PM!

Hey Jennie, I have the same two mutations. I sent you a PM!

talk to your clinic social worker about the Live2Thrive program with zenpep. i think the website for it is Live2thrive.com. they cover up to a $50 copay plus you get to pick from a selection of free things to get each month...so i get ADEKs free every month and my charge for the actual enzymes...

talk to your clinic social worker about the Live2Thrive program with zenpep. i think the website for it is Live2thrive.com. they cover up to a $50 copay plus you get to pick from a selection of free things to get each month...so i get ADEKs free every month and my charge for the actual enzymes...

I've been eating mostly Paleo for about 6 months...i say "mostly" because the cupcake i ate today was definitely not paleo! sugar has been my kryptonite. stopped eating it completely for about 6 weeks and my body was so addicted that i was a miserable person to be around so i promptly started...

I've been eating mostly Paleo for about 6 months...i say "mostly" because the cupcake i ate today was definitely not paleo! sugar has been my kryptonite. stopped eating it completely for about 6 weeks and my body was so addicted that i was a miserable person to be around so i promptly started...

you should look into CrossFit. It is by far the best workout i've ever done for my lungs. I swam competitively for many years, have worked with a trainer, run, biked, etc etc etc. and CrossFit has been more beneficial than any of those other activities ever were. It basically combines weights...

you should look into CrossFit. It is by far the best workout i've ever done for my lungs. I swam competitively for many years, have worked with a trainer, run, biked, etc etc etc. and CrossFit has been more beneficial than any of those other activities ever were. It basically combines weights...