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Well continuing on with the original topic.... My most gross/embarrassing moments was when I was hospitalized for a reeeeeally bad obstruction. I had an NG tube placed to pump my stomach for a few days but it stopped working at one point. So I started puking up... you guessed it... crap. pretty...

I remember a few years ago my pulmonologist suggested taking Ibuprofen daily to help combat any inflammation in my lungs, but I never really got it into my routine. I'm just wondering what other OTC's you may be taking, why, and if they're working for you. I think it's fair to say that a vast...

Awesome suggestion guys! Thanks a ton :) It's kind of exciting that there's 2 centers in Portland. Oh the choices.... I really want it to work out because I absolutely love love love Oregon. I never want to leave when I go (one of my sisters lives in the Medford area). Also I'm really curious...

For my 3rd clinical assignment I'm going to southern Oregon for 2 months. I'm seriously considering moving to Oregon within the next 1-2 years, which means new docs etc. While I'm in Oregon I'd like to take a weekend and go to Portland and check out the CF center there and talk to someone...

The only thing I can think of is that pretty well hydrated an "balanced" as far as your electrolytes do would just ensure that there's a right amount of water staying in the bowel, thus softening stools, reducing stomach pain etc. But that's my guess. My thinking is that if you're dehydrated...

Haha, whoops. I used the Vest during my Tobi years (resistant to it now). I guess it's a good thing that the Vest did absolute squat for me as far as mobilizing mucus then, letting the Tobi "settle." I'll bring this up to my current docs, I wonder if they're even aware of this protocol. Thanks...

Well, Cystics are more prone to osteoporosis because of the whole vit. D thing. However what you are describing sounds like a musculoskeletal problem, not just your bones (but one affects the other in certain ways so...). And by musculoskeletal I mean general deconditioning, weakness, fatigue...

This is going to sound dumb, but since when can you not do antibiotics while using the vest? I've never heard that before in my 20 years.

I just spoke to a pharmacist from the CF pharm and she said that a PARI rep spoke to them the other day, saying the eRapid distributes certain meds pretty much "the same" as a jet nebulizer. She also said that for Hypersal she thinks it's totally fine, for Dornase it should be okay, though...

Gotcha. The actual mouthpiece I have for Cayston says, "Altera" on it. I wonder how hard it would be to get the special mesh heads for each medication. The RT at clinic said they cost upwards of $200 a head! Ouchie.

This is exactly what I'm wondering. I've been on Cayston for a little less than a year and LOVE the nebulizer. So much so that (shame on me I know) I use it for my other meds as well (I'll use old mesh heads). It cuts down on the time tremendously and I just can't go back to using the standard...

My CF clinic is at the UMC, and is only "open" on Mondays. The Pediatric an Adult wings are on opposite ends of the room/hall thingy, but the actual CF clinic is in the Peds part because they don't have an adult program. -You have an appointment, wait 10-20 mins depending. It's always very...

Stress urinary incontinence. Don't lie, you know you've experienced this to some degree!

I was just at a week long physical therapy conference and attended a great 4 hour lecture on PT for CF. It made me realize how frustrated I am with my clinic and how lacking and basic the care there is. These PTs were more enthusiastic and more determined about treating CF than anyone I've...

Tums, Tums, Tums, and oh yeah, more Tums. When I was like 8 I ate a TON of almonds with no enzyme and was hurting so bad that evening my dad almost took me to the ER. We had a bottle of Gaviscon (an antacid) and drinking that did the trick, but it tastes awful. From then on I figured out that...

I've lived in sunny AZ my entire life and my D levels can still be low (everything else is fine though), so I'm not too sure how well a lamp will help you, but it can't hurt. It will at least help with your mood if anything. Meds might be the only way for us.

Last I heard he already beat the record weeks and weeks ago. If I see one more of these posts on Tumblr I'm going to freak...

Never heard of that before. Personally I've gone in a few salt water pools multiple times. Hell, I go to the beach regularly and swim in super salty water and the salt air is great. BUT I'm just an anecdote so... yeah. I can't imagine why this would be so. Probably just another overly paranoid...

I took minocycline for about 2 years to kick my Nocardia infection (didn't work anyways, but yay no acne!) I went through exactly what you're describing except that after taking the full dosage for just 1 day I was bed-bound for 3 because it made me sick. My sister had the same issue and I did...

I admit, I'm a "bad" CFer. I think the last time I did the Vest was.... I dunno, a couple of years ago? And yeah, I just rinse everything off. I seemed to have grown up out of the "loop" when it comes to standard protocols (sterilizing, the 3 foot rule etc). I imagine doing the Vest with...