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Type: Posts; User: CrisDopher

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  1. You look like you lift, but are your running?...

    You look like you lift, but are your running? Doing core strength exercises? Planks? When I was in my best shape, doing all that, I had a great abdomen at all times.
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    Yeah, I'm generally gas-free these days, though...

    Yeah, I'm generally gas-free these days, though that took a lot of experimenting to find out what foods to avoid. I don't want to miss out on calories, you know. And my bowel movements still turn...
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    The only things I didn't do with PICCs in were...

    The only things I didn't do with PICCs in were swimming and climbing. Beyond that, anything goes. (Docs may recommend against weightlifting with that arm). I even ran half-marathons with my PICCs...
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    I have declined fairly quickly. From being a...

    I have declined fairly quickly. From being a runner with FEV1 in the 50s to being unable to run, FEV1 under 20, and on oxygen full-time has been less than a year. In fact, I was still doing "fine"...
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    I'm in the transplant boat, too, and finding...

    I'm in the transplant boat, too, and finding exercise more and more difficult to sustain, but I am keeping active. Right now I get the most activity commuting, which involves quite a bit of walking,...
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    Extremely well-said Steve. You encapsulated a...

    Extremely well-said Steve. You encapsulated a lot of my thoughts exactly, especially as concerns the court decision.

    As for you, Albino15, the fact that you would bring such flaming and unhelpful...
  7. People w/ Cystic Fibrosis Related Metabolic...

    People w/ Cystic Fibrosis Related Metabolic Disorder have at least one CF mutation, sometimes (not always) two. The CFTR protein doesn't function perfectly in them, or seems to function fine in some...
  8. Thread: Running!

    by CrisDopher
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    Fantastic! Keep up the good work! You'll be...

    Fantastic! Keep up the good work! You'll be running 5Ks in no time.
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    I took the day off and slept most of the day.

    I took the day off and slept most of the day.
  10. I am alarmed that your doctors are not taking...

    I am alarmed that your doctors are not taking action on this quickly or effectively. Your first phone call Monday morning should be to your CF clinic and ask for a blood glucose stress test to be...
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    Well, if he's so far got normal lungs and doesn't...

    Well, if he's so far got normal lungs and doesn't seem like every cold turns into two weeks of hospital (they didn't for me in childhood and still don't BTW), and has a normal immune system, then I...
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    This sounds like CFTR-related metabolic syndrome....

    This sounds like CFTR-related metabolic syndrome. If you can get this diagnosis, then you should be seen regularly at a CF center to help handle the CF-like aspects.
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    I'm sorry, I may have missed something here,...

    I'm sorry, I may have missed something here, Heidi, but does your baby have a suppressed or weakened immune system in actuality? Does she have pronounced lung involvement or a history of chest...
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    I haven't, though that doesn't mean such a thing...

    I haven't, though that doesn't mean such a thing isn't currently transpiring. Generally, only patients who will benefit from Kalydeco are on it. Also, Kalydeco isn't going to reverse previous lung...
  15. Hi! Welcome to the world of cystic fibrosis and...

    Hi! Welcome to the world of cystic fibrosis and to one of the tightest, most knowledgeable communities in the world. If you'd like to join an email list, I'm the moderator of the cystic-l google...
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    I do think it's amazing they can detect the...

    I do think it's amazing they can detect the problems in the womb, test you and your husband, and get a diagnosis before the little guy's even born. What an advantage! You and your team of...
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    Well, this is a familiar tune. I've practiced...

    Well, this is a familiar tune. I've practiced fat intake control for most of my life. Including kind AND amount. But I have lately become more adventurous in seeing which fats and how much of them...
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    It is helpful to have friends who dont' freak out...

    It is helpful to have friends who dont' freak out at every new development as the years go by. By seeking out knowledge beforehand, you're prepared to be a rock-steady friend for him, when a...
  19. Rythe.... "obviously".... you keep using this...

    Rythe.... "obviously".... you keep using this word. I do not think it means what you think it means.
  20. Guys, this is not a medicine that goes into the...

    Guys, this is not a medicine that goes into the bloodstream and gets circulated. It stays in the digestive tract and operates on whatever is in close proximity to it in the digestive tract. It is...
  21. I'm pre-transplant at NY Presbyterian and have...

    I'm pre-transplant at NY Presbyterian and have heard the lectures several times. They have very good reasons for each and every dietary restriction. These rules aren't being put in place just to...
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    Marci, you're not alone. I've always been up...

    Marci, you're not alone. I've always been up front with my employers and have rarely felt that my CF was the cause of not getting the job again (I'm a freelancer). Some of my jobs are long-term,...
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    I'm not on SSDI yet, but I do know that a...

    I'm not on SSDI yet, but I do know that a transplant is considered an automatic disability qualification for one year.
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    Doglover, it's great to hear she is relatively...

    Doglover, it's great to hear she is relatively symptom-free. That won't last forever. But perhaps it can last a long time!

    Fel and Doglover:

    One thing EXTREMLY IMPORTANT: do NOT allow your...
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    I would not have a general peds be diagnosing or...

    I would not have a general peds be diagnosing or prescribing things for lung-related problems. I'd only have a CF pulmonologist do that.

    Different steroids do different things in the long term....
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