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  1. L

    I've been admitted *UPDATED on FRIDAY*

    Yesterday the doctors made the decision to change my antbiotics a bit. Now I'll be getting Tobi, ceftaz and merrem in IV, plus Zithromax and Levaquin oral. My doc is concerned about how low my PFTs are. I've only been able to get maxed out at .92L on my FEV1 and I desat pretty fast when I'm not...
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    bowel obstruction

    I've been here for almost a week with a small bowel obstrcution (as in, it's in the small small, not the obstruction that's small.) I haven't posted because the computer here is lousy and I didn't want it to get stuck when I shouldn't be using it in the first place. Please pray for peace from...
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    FREE AT LAST!

    I finally got to come home from the hospital. For details about it go ahead and check out my livingwellwithcf.blogspot.com blog. I'm so appreciative of all of you who sent me notes and cards and called me on the phone. It's great to be home! {hugs}
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    1st hospitalization of '09

    Well, here I am once again. I have pneumonia on my right side. The doc thinks we may have caught it early enough to get on top of it right away. I hope he's right. I hope that this is just a fluke and that 2009 won't be as crazy as 2008 was.
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    Vitamin Absorption

    Like most CFers my vitamin levels are practically non-existent, despite the fact that I take them 2 or three times a day. The nutritionist at my clinic is baffled and had no helpful suggestions for how I can increase my serum concentrations of these vital elements. Today I decided to try...
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    Inogen One

    Today the company who provided my oxygen concentrator dropped off what was SUPPOSED to be a portable oxygen concentrator for our trip to New York. I was absolutely horrified at what they brought! It was just as big as the concentrator in our bedroom. The only thing that made it portable was that...
  7. L

    Time for oxygen?

    I'm looking for some advice about how I can tell if I need to be on supplemental oxygen. I've been feeling quite SOB again lately and I seem to get winded during the most basic things. I had a nocturnal desaturation test before. Is there another test that they do to see if you need oxygen at...
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    SL Crash Course

    Hi folks, if you haven't done so already, check out my blog and read about what Second Life has to offer. If it sounds like something you'd like to try, PM me and I'll help you get started. I'm available for pretty much the next 4 hours! Plenty of time to show you around.
  9. L

    Topic Requests (updated)

    I've got a bit of writer's block when it comes to my Understanding CF blog. In the last year I've written just over 100 articles about CF stuff. I'm wondering what else to add. I know there's plenty more topics I can address, but they're not springing to mind. Here's how you can help me out...
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    Have you "Heard"?

    I wanted to call attention to something a lot of us know about Tobramycin, but hadn't given much thought to. I'd like to share my experience so that others can make an informed decision regarding their health care. I've never doubted that my doctors, my parents and I have made the right...
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    Insurance Denial

    I got a letter today telling me that they're taking away my vest. I can't believe it. The letter said that the documentation provided to my health insurance company doesn't warrant it. Specifically they won't let me have the InCourage Vest from Respirtech. I'm going to fight this tooth and...
  12. L

    Bad Experiences During or After Plane Travel?

    I was contacted by the writer of a magazine who is writing about in-flight medical emergencies. He is looking for stories about people with CF who have had in-flight emergencies or who needed medical attention immediately upon landing. If anyone has any stories about their O2 sats dropping...
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    How Much Fat Should We Have?

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>65rosessamurai</b></i> I've also stressed (and often asked why) about the idea of adding more fats to the diet was necessary when the CF patient's body has the hardest time absorbing fats, of all things. S Especially with pork...
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    Holiday Safety Reminder

    If you're the type who uses twinkle lights, or any other sort of strand lighting to decorate your home for the holidays, please be careful! This time of year, injuries and death from electrocution tend to spike. An ounce of prevention is certainly worth a pound (or more!) or cure. In addition to...
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    San Diego Air Quality is BAD

    According to the Air Pollution Control District, the current air quality is moderate to hazardous. The concentration of particulates in the air, specifically the small ones called PM 2.5s, is more than triple the National threshold level. These particles are the ones that penetrate deepest...
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    O/T Attention Parents

    As some of you may have noticed from my blog, September is National Alcohol and Substance Abuse Recovery Month. Teen drug abuse in affluent families is on the rise; prescription drug abuse in particular is reaching epidemic proportions. Where are these teens getting the meds? From parents who...
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    Invisible Illness Awareness Week is HERE!

    Coping With an Invisible Condition By Brian Grady, Ph.D. <b> What makes an illness or condition visible or invisible?</b> Assistive devices, body appearance, and behaviour tell others you are ill or disabled. Devices include canes, wheelchairs, walkers, crutches, braces. Most of these are used...
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    Oh poop! (almost)

    I've been doing really well with my pancreacarb prescription. It's been one of those things that has made me think "where have you been all my life?" For the first time in a long time things are formed and not greasy. Here's the catch. During my last hospitalization I got C. Dif. According to...
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    September is Alcohol & Drug Addiction Recovery Month

    Test Your Drug Abuse Awareness* Approximately how many current cocaine users (age 12 or older) are there? a. 1.6 million b. 3.2 million c. 2.4 million d. 2.0 million Answer: C What percentage of the population age 12 or older has abused prescription drugs in the past month? a. 4% b. 2.8% c...
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    Cleaning Your Nebulizer Pieces

    I found this in one of my bookmarked articles about CF and I found it reassuring. I'm sure I'm not the only one who gets a little nutso about making sure the nebulizer is spic and span all the time. According to this, it looks like we don't have to labor over the process so much. I don't know...
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