Cystic Fibrosis Forum (EXP)

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    Rights at work regarding cigarette smoke exposure

    With my job I go to people's houses to work with small children. I recently started in a home where they definitely smoke inside. I also smelled pot on one visit from another apartment, not the home I was in. I am going to ask my boss to be reassigned to a different home. Does anyone...
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    son may have cf

    On the website www.CFF.org it has a section on CRMS and what treatments, testing, and frequency of CF clinic visits the CFF recommends with that diagnosis. As an adult diagnosed with CF as an adult I have to admit to mixed feelings about preventative treatment with that diagnosis. I feel...
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    Something a relative said to me at a wedding -- cried myself to sleep

    I'm 37 and get asked repeatedly if I was really diagnosed with CF. I'm thinking no I just like to do a breathing treatment and vest while sharing a hotel room with 3 moms I'm friends with on moms weekend away. I think this sarcastically.
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    Sterilizing with an Avent steam sterilizer

    please report back Im curious. i have the avent 3 in 1. QUOTE=amber682;953905]Hi, I haven't been on in a while so forgive me if you've already discussed this. I heard we are not supposed to use the Avent sterilizers anymore that we got when the kids started Cayston. Something about FDA...
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    Pleas help! Need to switch jobs to be healthier

    I work for early intervention which serves children birth to three. Although I go to the kids houses I refuse homes with smokers and dirty homes. I also have a strict adherence to the sick policy of our company which states that we do not enter a home if anyone in it is ill and I do leave if...
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    Hello!

    I am 37 and pretty healthy so I don't know what you are going through exactly, but I want you to feel welcome here. I have gotten great advice on this forum from supportive people. You are not alone.
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    son may have cf

    Welcome, you have come to the right place. I understand your concern. My daughter is treated for CF, but not diagnosed. I am diagnosed with CF. I learn a lot about what other people do and ask questions on here about what to ask the doctor. This is how I am getting more confident that my...
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    Baby Vac

    I wouldn't have a baby near a dusty vacuums. I guess the only way I see it working is having a dedicated vacuum just for this baby vac. I am also guessing the reason it doesn't come with its own motor etc and instead uses the vaccine is to decrease the cost. Some corners should not be cut...
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    Exercise while vesting and or nebulizer treatments

    I want to be more active. Does anyone exercise while vesting and/or nebulizer treatments? If so, what exercise? What are the logistics? What about an exercise ball?
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    First Time Post

    I understand feeling overwhelmed. I was diagnosed at 35 because my daughters were tested and each carry a separate gene mutation known to cause CF. Then I was tested and have both mutations. At first I was scared and sad about my diagnosis, but now I feel so much better after the new medicine...
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    Parents with HSrs w/CF

    One suggestion for the hospitalization is come up with a signal for your son when he wants to speak to you privately and when he wants you to step in. It has been over a year since my daughters last hospitalization and I let her do the talking when the doctor etc came in the room. As best I...
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    Parents with HSrs w/CF

    My 14 year ols is a freshman in high school she is treated for but not officially diagnosed w CF. I'm diagnosed w CF. However, she did start rebelling treatments a bit since she had a hard time getting a schedule going with homework, band until 9 pm etc. So I let her go and she saw me stay up...
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    maybe hyperventalating while running

    Thanks for the advice . i talked with her doctor today and we agreed she hyperventilated because she pushed herself too hard. Now she brings her pulsox to practice and sees if she is actually having a hard time breathing or not and that helps her relax. She even told her doctor she wants to...
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    after 5 days doc decides to do bronch!

    Sweetninis, bronch is short for bronchoscopy. This is a procedure done under anesthesia where the doctor can look down the trachea to the lungs, take tissue samples if needed, and sometimes do a wash to get sputum samples to determine a course of treatment. This is not a test done on everyone...
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    maybe hyperventalating while running

    Thanks for the ideas. She ran again today, but stopped due to pain sharp in one spot between two ribs. Not out of breath. Usually a pain like that is followed by a blood streaked mucus plug coming up. Would you have fealt better seeing a pulsox showing you were OK? I could send her with...
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    maybe hyperventalating while running

    My daughter is treated for CF, although not diagnosed. I'm diagnosed with CF. Her lung function prior to CF treatment was FEV1 50% a year later she hit 100% and since she ranges in the 90s. She was running in marching hand this week and had an odd issue with breathing. She did her nebulizer...
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    My son has not one, but two very rare mutations

    I would contact John Hopkins Hospital's genetic department. They are gathering the data for CFTR2.
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    Any Veterans with CF?

    Yes, I am a veteran. I spent 5 years active duty, 4 years active reserve and then went inactive reserve due to I'll health. I was thinking about navigating the VA too, but I haven't yet. I was separated from the inactive ready reserve because I couldn't pass the physical to return to active...
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    For you unsporty people

    Have you tried a fitness class? I find I workout harder with someone else. I began karate with my daughter and really enjoy it. Kick boxing and Zumba are fun too. I put my classes on my calendar as appointments. I also find deals on www.livingsocial.com for inexpensive exercise classes.
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    3 Questions: Diagnosis For Some... Stitches...And Cough Attacks

    You are not alone. My daughter is nearly 14 and is treated for, but not diagnosed with CF. Her lung function FEV1 hit a low of 50% and that is what caused lots of retesting. She now has CF treatments vest, hypersal, antibiotics based on sputum culture and off all asthma meds and her FEV1...
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