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  1. U

    Pictures of Yourself!

    Hi All Picture of Sheryl my wife and myself on the beach with our two cocker spaniels, Archie & Alfie. Regards Jonathan
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    It's all in the infrared!!!

    Hi All Just me with some more of my observations from the CF world. I am sure that having IV lines put in are the bane of most of our CF lives at one time or another. As time goes on the veins in your arms are just harder to find. Admittedly some registrar's who have to site them are better...
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    Walking verses Running

    Hi Steph I tend to do walking on the treadmill when I am down the gym. I simply can't run for any length of time so I use a fast walk. Every minute that passes on the treadmill I raise the gradient by one. After 15 minutes it is really hard going but I can just manage it. And yet I couldn't run...
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    Looking into the Abyss

    Hi All Here's a strange thought. I was watching the film the Abyss the other day (released 1989). In it the film indicates that a deep sea diver can breath a type of liquid Oxygen. All very science fiction I thought. But I did a bit of searching around on goggle and found out the this product...
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    Adhesive Remover

    Hi Lindsey David is right, the best option is the adhesive removing swabs, but they may be hard to get hold of. Actually all they contain is weak petrol!!!. In our line of work we often have to remove adhesive marks and we use a product called Spirit Wipe, it is used in the car repair business...
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    bananas

    Hi It's not a bad idea to take enzymes with the bananas, as it's not just fat's that us mortals with CF have a hard time digesting. Both Protein and carbohydrate need help. If you look at the ingredients of say a pot of Creon it lists both Amylase and Protease as additional ingredients to...
  7. U

    Low oxygen?

    Hi Well here's my two Penney?s worth. This may be low O². At your next clinic get them to do a blood gas test. At my clinic it?s done with an arterial blood sample from the ear. This will measure all sorts of things. At my clinic the PO² level in this test is the indicator of the need for O²...
  8. U

    So what do we all look like?

    Hi all Lots of great pictures, Well here's me Regards Jon
  9. U

    So what do we all look like?

    Hi All How do all us Forum users feel about putting a picture of themselves using the new forum feature? Always nice to put a face to a loggin name. What do we think? Regards Jon
  10. U

    CF and Severe Fatigue

    Hi Have you had your blood gases measured lately? Your lung function may be OK but the O2 may not be so good. And you may have high Co2 levels. I found that both have a strong influence on how much energy I have. Also have you had a sleep test. You may find that your O2 levels drop heavily...
  11. U

    THIS IS ABOUT MALES

    Hi All I believe the percentages are a debatable issue but perhaps not the main one. The point perhaps is that as CF men grow older the thought of having children will enter their minds. And at this time the emotional pain of finding out that it is at the least very very difficult to have...
  12. U

    How close are they really?

    Hi All Just thought I would copy a previous post on this subject The talk of a 'CURE' for Cystic fibrosis is a very emotive subject isn't it. I suppose anyone who lives with a genetic condition holds out a hope for a cure. I think this is part of the coping strategy for living with a serious...
  13. U

    what if they find a cure!

    Hi All The talk of a 'CURE' for Cystic fibrosis is a very emotive subject isn't it. I suppose anyone who lives with a genetic condition holds out a hope for a cure. I think this is part of the coping strategy for living with a serious condition. How realistic it is, is normally the prelude to...
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    Colistin effects

    Hi Julie Had a similar problem a few years back. Testosterone levels very low. Have been using inhaled Colistin for over 10 years. Doctors advised having a prolactin level test. Results came back very high. Further investigation revealed a small benign tumour on my petitory glad. As I found out...
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    Flying (as in airplanes)

    Hi Sorry to confuse. When I said sats I meant to say Stats. The measure you are thinking about is the saturation level in your blood measured in percent. And anything above 90% in a person with lung disease is OK. Most people have this measured using a figure probe. The problem with this...
  16. U

    Flying (as in airplanes)

    Hi Have asked my consultant about this and this is his view. It depends on what your oxygen sats are like at ground level, i.e. normal. The oxygen level in a plane drops by about 2-3 points. So if your normal is say 12 (Normal lungs) and you drop to 10 you won't really notice the difference...
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    Where are we all from in the World?

    Hi Shevy In answer to your question here are my vital statistic so to speak. I am 41 years old. I was diagnosed in 1963 at the age of 3 months. Very luck back then as not many GP's could spot the symptoms. I was lucky that our GP had just attend a seminar on the new disease of CF! The only...
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    Question for Adults with CF

    Hi Jen This is a very much debated subject in the CF community. Personally I think it all boils down to your individual circumstances. If your step son is say quite ill at 11 with CF then a more informative discussion may be needed, however not all parents are perhaps best suited or...
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    PFT Reliability

    Hi Emily Interesting point. I would imagine most PWCF have felt at odds with their breathing results at some times in their lives. Sometimes better, sometimes worse. At my clinic the doctors always say that the results are a guide only as many factors influence the results, even your...
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    Is this odd?

    Hi All To add to my previous comments. I take my tablets though out the meal. Taking 16 tablets in one go before of after the meal would be very hard. As I understand it the tablets to work properly, need to get through the stomach to the duodenum hence the enteric coating on them (the anti...
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