Recent content by static

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    CF Foundation attendance policy

    I think it has more to do with insurance and lawsuits than anything else. Not saying it is good or bad, it's just the way it is. If a medical facility openly invites multiple C.F. people in a room and one gets sick they could be held partially responsible. However when we really think...
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    Husband in the hospital for the first time at age 30.

    My first hospital stay was at around 4-7 (sinus issues), but the first one I really remember was at 16. It was a big scary, I remember crying a bit, but it just turned out to be something I had to deal with. My next one wasn't until late teens (although i prob should of went in sooner) and since...
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    Working on disability - SSDI

    I don't have any personal experience but quite a few friends of mine have. They do check! They are pretty strict about enforcing the $ cap. Usually you get a notice saying youre over your limit and it will be cut off at x date of it continues. Even if you fly under the radar for a while they...
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    Dumped because I have CF...

    To me it boils down to examining quality of life, and through that evaluation age range comes into play as well as everything that is suppose to happen within that age range. Speaking only for myself (and trying to stay on topic as best I can) I have been struggling with this a lot lately. As...
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    Have you improved your fev1????

    Yeah inflamation sucks. I'm starting to get that a lot now too. Swimming is the only thing so far that I found somewhat helps with that. The mist combined with the air and exercise helps get the stuff deep within the lungs that would otherwise be blocked off by the inflamation. Of course make...
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    Depression CF related

    Reserved (can we do that lol- I might write something later) I also wanted to say that all of you, but especially beautifulsoul, inspire me. For me right now, I prefer anonymity but it is nice to connect a face with a message.
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    Lung Function

    Lung function is stardard measurement for everyone, c.f. or not. As a teen I was always in the high 90s and for most people with c.f. that tends to decline with age. Ways to halt the progression are the usual antibiotics, airway clearance, etc. If he is in his 70s it isn't likely he'll go...
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    In Need o Help Right Away

    Fortunately I am well taken care of, but I know quite a few people with situations similar to yours. I also live in California. First where about in cali are you located? I know in the Sacramento region they have section 8/housing choice vouchers. Basically you fill out the paperwork verifying...
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    Mystery illness - seeking opinions

    I'm not as sold on the CF as printer as it sounds like a multitude of issues but I agree you should get tested to rule it out. Other than CF specific tests standard tests I would ask for are a glucose tolerance test, mri for a better look at the lungs, and cell counts to detect infections. it...
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    How do you avoid the pity party when you tell people you have CF?

    The way that I handled it was just not to tell anyone, ever. Of course then it can come across as I'm lazy or disrespectful depending on the circumstances. I am still very careful who I tell but I figure if I'm going to spend a lot of time with them I'd rather them pity me than think those...
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    Working with CF

    First off, congratulations on finishing your degree! You worked hard for it so you should be extremely proud! I work in the health care field as well, part time. At first I was very secretive about my disease (and still am to most people), but I soon realized it was easier to come forward with...
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    Scared-possibly have CF (input PLEASE)

    Sorry for that, I should have changed the wording/ tone to be more respectful towards your concerns in my response. I hope I didn't deter you from posting any questions/concerns in the future. I'm glad the information you received from everyone helped.
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    Scared-possibly have CF (input PLEASE)

    Honestly I think you are worried for nothing. As you stated it has a relatively low impact on your life (at least lung function wise), so why treat something that isn't that big of a deal? There are many more routes/medications you can take before you go to the extreme and assume it is CF. The...
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    How do you guys deal?

    With CF as you know everything is a trade-off. Same goes with mental health. Every medication has a potentially undesirable effect, the trick is to find the one that works best for you. I'm sorry you have not found that yet. And you're right, most doctors won't sign off on long term use of your...
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    D508 and E92K. Is there any chance Orkambi will help?

    Keep fighting and like Aboveall said check out the possibilities of new drugs. I think most doctors are conventional on how they approach the disease so the more you can advocate for yourself the better. I've been the first in my clinic to try new things I found out about from forums like this...