Search results

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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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    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?

    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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    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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    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 out for days until I am put on an oral antibiotic course); other times I get a cold and it...
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    Simple question for cf'ers who are under 30% FEV1 (or post-transplant) see inside

    Hi, How long have you been below the 30% FEV1 mark? And post-transplant cf'ers - how long were you under 30% before you got your transplant? I am at 32% now. Thanks, enjoy your weekend! Vera, 30
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    Transplant and emotions

    Hi all, I am almost 30 and about to begin my transplant journey. Will get evaluated next month. This is opening a can of worms with a lot of soul searching type questions and thoughts, which I believe to be part of the process. I would like to hear from people who have received their...
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    I live in Europe - How can I get Kalydeco without the G551D mutation?

    I live in the Netherlands, and I will ask my doctor about it, but I don´t think he will prescribe it. Does anyone in Europe take Kalydeco off label? My mutations are: R334W and N1303K. Any help will be greatly appreciated. I also have some savings but I think the price must be off the roof. Thanks!
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    What is the maximum FEV1% that you have to be at to be able to receive lungs?

    I'm not talking about FEV1 needed to be considered for evaluation, but to actually be transplanted. I live in the Netherlands and I was informed today that only patients with an FEV1 of 20 or below 20% are able to get organs due to shortage of organs! Thanks for your input. Vera 29 Netherlands
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    What's your experience with Cayston?

    Hi all, I will start using Cayston in a couple of weeks, 3x a day. I have used both Tobi and Colistin, but never Cayston. My FEV1 has been in the 30s for a long time. Any impressions you'd like to share about this medicine? Thanks! Vera, 29
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    Anyone with tattoos on arm/ forearm - does it make it harder for IV treatments?

    Hello, I have a tattoo on my forearm and it's never been a problem as far as IV treatments go. I have been considering getting a half sleeve on one of my arms but I am afraid that it might interfere with IV treatments and anything related with veins in that area. I certainly won't get a tattoo...
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    Dog - Yes or No? Please advise

    Hi there, My lung function has been in the low 30s for a few years and everything is getting harder and harder as far as my energy goes. Thankfully I am not working and I almost never have hospitalizations (I've had 2 my whole life), but every sort of physical exercise/activity requires some...
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    Have you become more introverted and anti-social as your health declines?

    Hi, I have never been very good at keeping friends around, I guess I have always enjoyed being on my own. However, I still went out a lot and interacted with others quite a lot. As time went by, I am now around 30% FEV1 and I have literally lost all interest in being with other people. I am...
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    Interesting info for cf females

    I saw my doctor yesterday and asked him to prescribe me a contraceptive pill. He proceeded to explain that the contraceptive pill will not only act as a contraceptive but also as therapy for cf. The reason is that female hormones (estrogen) make cf worse, and the pill will sort of block my own...
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    Interesting info for females

    I saw my doctor yesterday and asked him to prescribe me a contraceptive pill. He proceeded to explain that the pill will not only act as a contraceptive but also as therapy for cf. The reason is that female hormones (estrogen) make cf worse - it is also believed that this is one of the reasons...
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    Do you have to blow your nose often?

    Hi, I have to blow my nose constantly, even when I don't have a cold. It's worse when I have a coughing fit (several times a day). It has also gotten worse since I started using oxygen at night 5 months ago. My nose is constantly dry and pretty congested. My doctor tells me there's nothing I...
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    Question about diabetes testing

    Hi, I am pancreatic sufficient (no enzymes) and standard diabetes tests always indicate normal values (no diabetes). But I had an appointment with my doc this morning and he said that there is a new way to test for diabetes which consists of inserting a small chip in your belly area and leave...
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    Simple question about Prednisone

    Hi, Do you cough more on Prednisone (in the beginning)? I know it's supposed to suppress mucus production but I've also heard that in the beginning it may cause you to cough more in case there's old, residual mucus attached to our lungs. But not every doctor is too convinced. I'm currently...
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    Zoloft and Prednisone

    Folks, I'm going through a nightmare. I am in the hospital for 3 weeks for a sort of a tune up, to see if there's any chance of improving my lung function (my lung function has been stable at around 35% for years and I don't currently have an 'active infection'). When this morning my doctor...