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It sounds like you're not doing a proper sinus rinse, squirting a 20ml syringe up your nose is like just wetting the bottom surface down, no matter how many times you do it. I'm using almost 500ml in a sinus rinse. You need the high volume to Flush out the sinuses, it should go up one nostril...

I moved out after college, I was a little worried but excited too. I was already pretty independant with all the CF stuff, so the challenge was the typical stuff. Setting up an apartment, buying groceries and cooking for myself. I also ended up eating lots of pasta, I went vegetarian at the same...

Only 20ml in your sinus rinse?? You need to do a lot more to flush it out. The standard Neilmed squeezebottle is 8oz, but I bought a 16oz online which makes a huge difference for me. One tip I've learned is if one nostril is clogged, and your head gets pressurized when you try squirting out...

As someone who was alive and mingling w/ CFers before the days of isolation, it's not that dire. However you should be wary of any new bugs you guys culture or when you get sick. If one of you gets MRSA or cepacia keep your distance. And maybe keep the physical contact low. As a kid I would be...

I've had to explain many many times, it varies slightly based on how much details they want to know. But usually goes: "so you know how you have a thin slippery mucus lining in your lungs, it protects them from infection and particles. Well in CF it becomes thick and sticky and actually traps...

me too please. erocks77 [at] gmail.com Try posting it elsewhere and linking it to here. Also for others, I recommend not writing your email out properly, this site is searchable and bots will likely grab your email and start sending lots of spam.

Only relevant for Californians. Since I've gone part time 2 years ago I wasn't qualified for the core private insurance plan they offer through my work and have used GHPP solely. I haven't had any issues recently with GHPP, only when transitioning, and they cover 100% of costs so I'm hesitant to...

I know it's been a while, but thanks for the responses. I tried cough drops, Fisherman's Friend was a pretty potent one. I feel it open my airway up a little, but it doesn't really stop the coughing which comes from mucus moving around. Welshwitch, unfortunately the mucus is produced pretty...

I think I was in the upper 70's then. I'm 37 now and hover around 60% & weigh 130 pounds. Just take care of yourself and the decline will be slow, with the cell-treating drugs coming out soon, most of our FEV1's could probably go back up. Just keep your lungs from accruing damage.

Do you have any info on how this Cyruta works? Looks like the main ingredient is Buckwheat. A remedy I've used for years to stop a bleed is cayenne pepper. It was recommended to me years ago on this forum by another bleeder who couldn't lay down or be active until using it. The first time I...

I'm a chronic bleeder and have bled at the gym, and all types of situations. I have noticed a trend with any excursion getting my heart pounding hard, running, and sometimes laying down if I just had one. I've been pretty good for a while now and have been hitting the exercise harder than ever...

I chose office work partially b/c of my CF. I wouldn't recommend work where it's physically intensive, as Peter suggested. You may not always be up for that task, although exercise is good, don't make a career based on it if you know you get sick regularly or couldnt always handle it. If you...

It's definitely been increased through my life, mostly my teen growing years. I take 12-14 Zenpep 20's w/ meals and less with snacks, depending on the snack. I used to take 16 Creon-20's, but Zenpep helped me get down. I haven't heard of anyone who takes more, so I'm interested if my record...

I think a lower volume is pretty normal for us, and almost clear as well. I'm not sure why you'd want a bigger load, there's less mess the way we have it. 98% of CF men don't ejaculate sperm. Not sure what's going on with the ball, that may be unique to you. And no performance issues here...

Yes go to a CF center: http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/ They'll probably have you start with the sweat test. It's quick, easy and cheap. The genetic testing can take some time I assume. But is a backup plan when the sweat test comes out...

Why not start with a sweat test welshwitch? It sounds like she never actually got it. Is your skin really salty after your sweat dries up? You shouldn't hide symptoms from your docs, their job is to help you feel better. If you're diagnosed w/ CF it could help you a lot, the treatments might be...

Yeah I'd love some Kalydeco, of course it won't work for me yet. Waiting for progress on meds is getting a little frustrating when it all seems so close. I've been trying to get on the Aerovanc study at my CF center for over a year. Anyway, good idea on the cough drops. I've used them for plane...

I'm surprised I haven't really seen this come up. Sometimes my cough is frequent and very loud. I'd love to have a solution to muffle the sound significantly. I looked for a device last year, they sell cough mufflers for hunters. I bought one and it's a joke. Just a block with dense foam, but it...

I've seen the topic of this book and photos being discussed, but haven't looked at the details too much. I thought I should bring to your attention a similar project that was done with a corresponding book. The Breathing Room was a nonprofit featuring photos and poems depicting adults with CF...

Thanks for sharing Michael. What were the major med routine changes that made it harder to work 3 days? I've been working 2-3 days/week for the last year or so. My days still fill up, but I go a slower pace and there's more variety in my life. I definitely use the extra time to exercise, eat...