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    Have you ever received PT in a hospital?

    So I'm a student PTA and we've briefly touched on the subject of possibly giving PT (exercise, chest percussion etc) to pulmonary patients. I think it's cool that I may be able to work with these types of patients because like most CFers I have an interest in it. However, in my mind it seems...
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    Daily painful abdomen

    So for the past few years or so I've been having this issue. It's not "I forgot my enzymes" pain, but like a deep, deep aching/bloating pain, mostly in my<strong> left</strong> side. It used to only happen if I'd be sitting poorly for long periods of time, but over the past year since starting...
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    Who doesn't eat extra salt?

    Granted, when I was a kid I'd <em>pour</em>salt on everything because 1. I played soccer in the desert year round and 2. everyone told me to eat lots of it. I looooooved salt. But now I hardly eat salt at all. I kept forgetting to add it to food and my tastebuds adjusted. Now if I eat anything...
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    Anesthesia issues?

    Something I've always wonderd, does CF have an affect on anasthesia? Do we metabolize it faster/different? The reason I ask is 3 times I've had anasthesia "issues" (well, <em>I</em> call them issues...). Time #1 and #2 I was getting a bronchoscopy and I bit down on the scope. The first time they...
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    My mother makes me laugh....

    Some background: my mother is the program director at my college (Physical Therapist Assistant program) and this semester she's teaching Fundamentals of Disease. Right now we're going over infectous diseases, and she covered pseudomonas, and said, "I'm not sure if it can get into the lungs"...
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    How many PICCs before Port?

    I've had 2 PICCs thus far, both in my left arm, and both were <em>extremely</em>hard to place. I'm a touch stick: my veins are tiny and squirmy, and for both procedures I had to be <span style="text-decoration: underline;">completelyknocked out to get the lines placed. I know eventually I'll...
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    Random Q about pregnancy are scars

    No, I am not pregnant nor intend to become so for a very long time, but this question has always floated around in my mind. How does pregnancy affect a meconium ileus scar? I had the surgery as a baby and of course have the lovely 6 inch scar right across my abdomin, above my belly button, as...
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    Cayston shortage???

    So, just tried to refill my cayston and was told by the CF pharmacy that there's a "maufacturing issue" as of last week (a.k.a a shortage) and that GILEAD is only giving cayston to those who have had 2 rounds in the last 6 months or another specific group of people. For some reason they say I...
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    New drug--Kalydeco--Approved

    My lovely pharmacist sister, who's always researching and keeping us up to date on CF med stuff, just sent me this email about the new drug Kalydeco, which targets the G551D CF mutation. It was just approved by the FDA a few hours ago I believe, and this could lead to the approval/release of a...
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    Intense pain in upper back...?

    Once again I'm getting this pain in my upper bck, I'd say along the medial border of my scapula. Every time I cough it's a horrible, stabbing pain, so I'm not able to cough right now, at all. This happened once before a few weeks ago, and it's sudden onset. It feels like a pleurisy, only on my...
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    10K in New York, 2012

    My sisters and I want to do a CF 10k in New York that's in July; it's the 2nd annual Boomer's CF Run to Breath. I've done a 5k before, but didn't run it straight, and my mile time is pretty sucky (like 11:30!), but it's definatly a goal of mine. My oldest sister has already been running 6 miles...
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    You are a patient. You have rights. Speak up.

    I wanted to write a post about something that happened to me on my last hospital stay, and why I think young people with CF, especially those transitioning into the adult world, should be aware of.<br>Long story short, the Sr. resident assigned to me misdiagnosed me with CFRD. What happened was...
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    Urgent question about Cayston/Altera neb

    I just started Cayston a week ago, and everything's gone great, though I'll admit the whole "sanitize after every use" is a bit annoying. I've been pretty house bound but come Monday I'm going to be starting my college studies. I have class from 1-5 pm, but need to do a treatment right before...
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    What are you allergic to?

    Just curious as to what things--meds, foods, animals, plants--you're allergic too (not sensitive/intolerant).<div><br></div><div>My only allergy is Sulfa medications, which kinda stinks since a few drugs used to treat CF related things require Sulfa drugs. Apparently when I was a baby it made me...
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    CoughAssist machine?

    Last week my dad brought home a new piece of equipment (for me at least) to try out. It's called CoughAssist by Respironics (or the Coughalator, but I think that's just a funny name my dad likes to use). What it does is push and pull air out of your lungs using different pressues, similar to the...
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    Not taking enzymes?

    When I was a kid God forbide I missed my enzyme. I used to get those horrid stomach cramps for hours all the time and man were they brutal. As I got older I got better about taking my enzyme and whatnot, but I've always wodered something. What would really happen if I didn't take them? For...
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    Transitioning

    So... I'm soon to be 18 (3/31!!) and my mom has een saying for the past few months that she really wants to start "training" me on dealing with the insurance companies and all that jazz. I'm interested in how this'll go (I'm more of the "No, you're NOT going to hang up on me. you're going to...
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    Treatments w/oxygen

    so maybe I'm a total noob and am behind the times, but I've recently discovered doing aerosol treatments hooked up to an oxygen tank <img src="i/expressions/face-icon-small-smile.gif" border="0">. The idea just popped into my head after a hospital stay in December and I think it's fantastic. My...
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    Do you enjoy hospital stays?

    So I've only been hospitalized twice for strict CF reasons (not including birth, and once i got the flu in 3rd grade, but those wont count) I've discovered that I actually enjoy hospital stays a bit, and I feel really guilty for it. My first stay was mid Freshman year, so 2007, 2008 ish for a...
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    Your Identity

    I've always refused to wrap my entire identity up in the fact that I have CF. It feels so... blah. On an entirely different level of blah. I feel like in today's world people act as if they "own" the disease and that they're the only ones entitled to it, y'know? Forgive me if this sounds like a...
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