Search results

  1. S

    What's it like to die with CF?

    I've been pretty close and all I can say is that as your O2 level drops your brain starts to shut down, but it is pretty close to drowning. I've heard that a way to get an idea what it's like to have lung problems is to try breathing through a straw while you exercise but I never had to try it...
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    Doing the vest while inverted!?!

    I've thought about the same thing. My problem is when I start coughing sometimes I have to stop everything and get "restarted". I would have to be able to get back upright in a HURRY for me to be able to try it. I used to do yoga every day, long ago. It felt great as long as you do it every day...
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    How careful are you?

    I work very hard to keep my immune system strong. Other than that I just try to stay away from people who are obviously sick. I hate taking change from someone who has a runny nose and coughing everywhere. On the other hand there are times when I sound like one of those people that I try to stay...
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    Those of you who have a lot of lung damage might want to look into Breo. I have started going to a pulmunologist and he has put me on Breo. It has really helped, at least for now. I've only been using it for about 2 weeks but my O2 levels have gone up by 3-4 %. That makes a big difference when...
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    Stem Cell Therapy- Has anybody done it or know anyone who has?

    I have been doing research on this for several years but have not talked to anyone who has done it. It sounds like it might work but it might also be a scam.
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    Dependency on oxygen

    I'm not a doctor but if they aren't telling you to have him do some kind of exercise while he is on oxygen I think I would be looking for a new doctor. Lungs are resilient but only up to a point. I am sad proof that it is VERY hard to find a way to get that lung function back once it is gone for...
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    Am I the only diaper dependant cf'er?

    Well said!! Sometimes we get so wrapped up in trying to be "normal" that we forget what is important, that we are able to be part of the world in which we live and to contribute something, whatever it is, to that world.
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    Am I the only diaper dependant cf'er?

    I have been dealing w/ it for about a year now. Seems like O2 levels dropping makes it much worse. I was just reading that D3 levels being low may be connected to incontinence. Could sure use any suggestions other than diapers, but like you said, I guess diapers are better than the alternative.
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    In dealing with CF,"We've come a long way Baby".

    I never took enzymes until much later but I used to hate having to sleep w/ the foot of my bed raised up and no pillows. I do remember some enzymes that were granules w/ a little spoon like a coke spoon. But since they tasted horrible and didn't do much good and were really expensive I never...
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    Trying to gain weight -- am I doing everything?

    I have had problems w/ appetite since about the age of 30. I used to eat like food was going out of style but it seems like as my lung function went down so did my appetite. I tried the anti-histamine route but it made me like a zombie. I have found that exercise definitely helps w/ weight...
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    I think people are devi ded into fighters and quitters. Quitters w/ CF don't last very long. I don't know what happened but it's good that you're a fighter.
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    Bacterial food web may be key to cystic fibrosis

    Could somebody who has more time than me do some research into Lactoferrin and Xylitrol to see if anyone has used them to treat lung infections. If you read the link above, that is what that Dr. is using to treat biofilms on Diabetic wounds that won't heal. those 2 things together seem to break...
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    Why would it be bad to do something that is good for you. Obviously it depends on what you are juicing and what else you are eating but I can't think of anything w/ CF that would make it dangerous to juice.
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    I'm 34!

    Congratulations!!!! Living beyond your "allotted time" does give you a strange sense of power doesn't it? I know I was supposed to die almost 50 years ago, but still hanging on; reminds me of the old poster of the kitten hanging by one claw sometimes but it is good to be alive anyway.
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    TOBI Podhaler

    Sounds like this is working out so well that I can't imagine why I have always refused to use Tobi.
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    N-Acetyl Cysteine, useless or useful?

    I have been going down the progression of Glutathione myself. I took just the tablets for too long and then I found out that they don't get absorbed at all so now I'm taking the Pharmanac and a product called Cellgevity. The theory behind Glutathione is great. Everyone w/ CF is low. Not only...
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    anyone have problem with blockagae?

    Sounds like the vest is working. Ask your Dr about Mn. Protocol if you aren,'t already using it. That will help to clear your lungs much quicker.
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    I have to agree w/ Bill. Tell him that there is always a reason when you end up on IV anti-boitics. If all we had to do was take vitamins every day most of us would still be in great health. If he can't even do that, what else won't he do? Life doesn't get any easier. As much as it seems like...
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    How many CFers are 55 and older??What is your age if you do not mind telling us? :))

    I'm 57 and work full time driving truck cross-country. Lived a VERY active life up until the time I started driving truck about 20 years ago, then I let that go to drive day and night to make a living, and now I'm paying the price. After ending up in the hospital again a couple years ago I...
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    annual review

    As someone who is looking back on 30% let me say that every point you lose from now on is like a piece of your life that has been taken away. I don't say that to be negative, because I haven't given up either, but it is much easier to hold on to what you have than to gain back what you've lost...