Recent content by Twistofchaos

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    body image

    Doctors do tend to want to overdo it a bit ofcourse. They want us to hit a certain BMI and we do want a nice reserve but most CF'ers severely lack musclemass and making up for the weight in fat is not so useful after a point. Indeed because of self image issues and making it harder to be active...
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    Weight Lifting

    Depending on where you are with your CF that's not actually true. <50% fev1 pretty much all you want to be focussing on is strength training ironically also to improve aerobic performance when needed instead of just desaturating, tiring the heart and getting no benefit for the rest of the body...
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    Weight Lifting

    The best decision you will make in your life! Not just improve lung function but so much more. Much more oxygen efficient able body, healthier weight and appearance, self confidence, knowledge about nutrition, sense of accomplishment and the best antidepressant you can get etc. The list goes on...
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    Highest FEV1 ever?

    105% give or take, can't quite remember as it's been atleast 20 years ago but the % of predicted number is only very roughly being corrected to height, weight, male or female, age etc. And is going to be pretty inaccurate if you want to hold it up against the magic 100%. So absolutes in fev1's...
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    help building muscle post lung transplant

    Look into basic starting strength programs like Rippetoe's. You want to train like a strength athlete and focus primarily on the squat, deadlift and bench to build a strong base. You can do that at home as well by getting a barbell and a squat rack. Read all the stickies on forums like...
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    How to

    You can't get hypertonic saline where you live? You have to pay for it? Try to get your hands on "real" hypertonic saline though as it's safer, the amount of salt more constant and making it yourself a bit of work. But you can make your own simply with distilled water and salt. Make sure the...
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    Post Your Orkambi Updates

    #DjFunkyFife Just a thought but that could just be the result of summer/humidity. Here it's terrible at the moment and am experiencing much of what you are describing and am nowhere near Orkambi. (looks like it'll be a while here in the Netherlands, but reading along with you guys all the same...
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    Travel question (a little wierd)

    Sorry! I got the terms confused but I ment checked baggage ofcourse, not handluggage. Hope Rebjane hasn't left yet. We and our handluggage get a propper scanning in Europe as well so don't put the drugs in there, put them in the stethoscope.
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    so frustrated...major drop in lung function so fast

    Could be your lungfunction will come back up a long way as you clear out all that mucus. You don't mention your exercise but incase you don't there's just not any other way to do that than to exercise a lot. Antibiotics and nebbing just doesn't cut it. Doctors don't stress this enough or at...
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    Travel question (a little wierd)

    Keep it in your carry on luggage. Here in Europe they barely even check that. I've never been asked about my big bags of medicine, strange equipment and dodgy supplement powders. But to be on the safe side throw in a big copper cone, two cups on a rope and a 200lb 1890's telegraph machine so...
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    Husband with CF has no desire to have sex or be touched.

    How is his diet? Is he very pancrease insufficient? First he could try to up his fat and vitamin D3 intake as those might boost testosterone and libido quite a bit. Men need decent levels of fat in their diet to produce testosterone. Also when testosterone is that low TRT could be a good option...
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    Sore muscles and soft tissue

    Likely CF related. Our bodies tend to be achy because of things like inflammation, coughing and fatigue from that, possible nutrition problems, mental issues (stress etc.) etc. Stretching is great but depending on how intensely your stretching sessions are the tissue that you stretched could...
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    Protein powder and carb loading supplements

    Nice bump. Yes in theory "real food" is better but: I can't afford 2+ kg of meat and fish a day. Nor do I want to and while there's plenty things wrong with the dairy industry as well to get the bulk of my protein through whey seems more ethical. Oh well since that 2013 post I did gain a very...
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    Could my new home be making me sick?

    Stress of moving seems more likely to me, but everything's possible. You can check humidity with a cheapo analog humidity thing from the dollar store. Or a simple weatherstation with humidity for maybe 10 bucks. Now in summer you might get over 70% indoors, much higher would be problematic...
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    Motivation in the Morning

    As mentioned above exercise the previous day where you try to clear out your lungs makes a huge difference the next morning. Mentally having a goal or something to work to helps. Write a book or craft something. Work towards making the trip of your dreams. Lifting weights is a good motivator for...