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  1. I wonder why R334W isn't on the list since it...

    I wonder why R334W isn't on the list since it also is a residual function mutation. Does anyone know?
  2. I've been in the 30s% ever since I can remember...

    I've been in the 30s% ever since I can remember so my body is very adapted to it. I don't work anymore but I try to stay pretty active. Having a dog really helps! I take her on two daily walks (30 -...
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    I'm sad to see that one of my mutations which has...

    I'm sad to see that one of my mutations which has residual function is not on the list :(
    R334w
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    Congratulations :) This is awesome. You deserve...

    Congratulations :) This is awesome. You deserve the happiness.
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    My second mutation is N1303K. The studies want...

    My second mutation is N1303K. The studies want someone with D508F so I wouldn't be able to participate.

    My fev1 is 30% and has been between 30% - 37% for the past 8 years.

    I have an...
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    Jricci, I am one of the few people who also has...

    Jricci, I am one of the few people who also has the r334w mutation!
    I was very disappointed when I found out that it didn't show much benefit in vitro with kalydeco but I also believe that the...
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    Question about second hand smoke

    So, I know that smoke causes irritation in our airways which causes us to cough more.
    I very rarely am exposed to second hand smoke and today I was and I'm now having a very productive cough....
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    I also have tattoos and I think that if they are...

    I also have tattoos and I think that if they are done in a clean and trustworthy environment it should not give you any problems.

    I agree with the other posters though that at that age it is...
  9. Looking for input from the partners of someone with CF

    Hi all,

    I'm a 31 year old female with CF. I have been dating my boyfriend for 4 years and we have been living together for 2,5 years. This means he has seen the ins and outs of this disease. I...
  10. Thanks Donna! I will follow the advice and try to...

    Thanks Donna! I will follow the advice and try to switch to fragrance free products. Do the normal (most well known) brands have the non fragrance type or do we need to look for different , less well...
  11. Hi there, I know you don't want to hear this but...

    Hi there,
    I know you don't want to hear this but smoking will always put you at a disadvantage regarding CF. If not now, then later. I'm not sure about vaporizing it but I know it is a lot less...
  12. Thank you for your feedback. I will get a medical...

    Thank you for your feedback. I will get a medical mask for when I have to use cleaning products!
  13. Can cleaning products make you cough up blood?

    Hi all,

    I never cough up blood and now I just did. Basically I coughed up about 5 or 6 times and instead of the regular yellow mucus I have, I just coughed up what looked like little blood balls....
  14. Thread: R334w

    by nocode
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    Pseudomonas. Can you get rid of cepacia? Have you...

    Pseudomonas. Can you get rid of cepacia? Have you noticed a decline since you got it?
  15. Thread: R334w

    by nocode
    Replies
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    Hi Foxalive! My other mutation is N1303K (I...

    Hi Foxalive! My other mutation is N1303K (I checked).
    What do you mean by your last sentence? :)

    Greetings to Russia.
  16. Thread: R334w

    by nocode
    Replies
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    Hi everyone. I'm a 31 year old European female...

    Hi everyone. I'm a 31 year old European female who also has this mutation! My second one is N3103w (wow can't remember for sure now if the numbers are right).

    My lung function has been in the low...
  17. Who here has Pulmonary Hypertension and how do you manage it?

    During my transplant evaluation last year the doctors found out I have pulmonary hypertension (the pressure on the valve should not be above 25, mine is 29).
    At the time they said everything was...
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    How much do you sleep?

    Hi,
    I have been noticing that on nights when I sleep about 9 hours or more (no alarm) I usually have less energy the next day, and if I set an alarm and sleep less than 8 hours I feel more energetic...
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    Hi, My saturation is between 90 - 94% when...

    Hi,

    My saturation is between 90 - 94% when idle. I feel fine on low activity level without supplemental O2. My sleep study showed an average of 86% saturation, the lowest point reached being 80%....
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    I did the test in the hospital. I tried doing it...

    I did the test in the hospital. I tried doing it at home once but would you believe that I was not able to fall asleep with the thing on my finger?

    I think it's worth giving them a call!

    Just...
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    Hi, I think night oxygen could help based on...

    Hi,

    I think night oxygen could help based on the feeling you have that you are "drowning" sometimes when you wake up.
    If you can get a sleep study done with your cf team that would be most...
  22. Great explanation, thanks!

    Great explanation, thanks!
  23. Why do some colds spread to the lungs and others don't?

    I am not sure if I am interpreting this correctly but I feel that sometimes when I get a cold, it spreads to my lungs straight away and it seriously worsens my CF symptoms (I basically cough my lungs...
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    I (30, female) suffer from the same problem.. I...

    I (30, female) suffer from the same problem.. I am constantly blowing my nose, especially after I have a coughing fit. If you find something that works, let me know!
    Good luck.
  25. Congratulations Dave! Yay!

    Congratulations Dave! Yay!
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