Search results

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    Hello Imogene. I don't know if you've heard the sad news that Jricci passed away on February...

    Hello Imogene. I don't know if you've heard the sad news that Jricci passed away on February 1st. As she was a great contributor here I thought you should know. I was a friend of hers. Regards, Vera
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    Residual Functions Mutations going to be on label for Kalydeco

    I wonder why R334W isn't on the list since it also is a residual function mutation. Does anyone know?
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    daily activities for folks that have PFTs in 30's and 40's?

    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 - 60min each), I shop for groceries several times a week, I workout twice a week at a clinic, I go...
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    VX-661-108 (residual function study)

    I'm sad to see that one of my mutations which has residual function is not on the list :( R334w
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    Just Married! (Pictures included)

    Congratulations :) This is awesome. You deserve the happiness.
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    New Study for Ivacaftor/lumicaftor

    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 appointment tomorrow so I'll talk to the doctor a bit more about this. Thanks for all your help. Is it...
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    New Study for Ivacaftor/lumicaftor

    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 result could be different if tried on people. Do your doctors have an explanation for the slowing down...
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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. More productive than usual (less work to get stuff out). My question is: did the smoke contribute to...
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    Can people with CF get tattoos?

    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 likely that you will rush into getting something you might regret. Sorry, sucks to hear but it's very...
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    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 cough up a lot of mucus and blow my nose all the time (I always cough up in the bathroom, so never in...
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    Can cleaning products make you cough up blood?

    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 known brands?
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    I smoked cigs and marijuana, how will this effect my lungs?

    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 harmful than normal smoking. I'd still be reluctant to vaporize. However, as a person who enjoys...
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    Can cleaning products make you cough up blood?

    Thank you for your feedback. I will get a medical mask for when I have to use cleaning products!
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    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. The thing is, I have been cleaning my bathroom for a little over an hour and using a lot of...
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    Pseudomonas. Can you get rid of cepacia? Have you noticed a decline since you got it?
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    Hi Foxalive! My other mutation is N1303K (I checked). What do you mean by your last sentence? :) Greetings to Russia.
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    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 30s for a really long time, around 10 years or so. Other than a crappy lung function I feel pretty...
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    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 okay with my heart and strangely it wasn't until my most recent appointment (last week) that mt...
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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 the following day. Do you notice this to be the case with you? Do you take naps? I always...
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    people using/on oxygen need some input

    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%. I am on 2 Lt at night, continuous flow. I also use 2 Lt when exercising. My doctor and...