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Thread: Q+A Adult with CF

  1. #1
    Junior Member
    Join Date
    Feb 2018

    Q+A Adult with CF

    Hello all,

    My name is Sarah and my husband, Dave, is 31 and has Cystic Fibrosis. We put together a video last year for the CFF Great Strides walk in order to raise awareness for the walk and the disease and to tell Dave's story. In doing so, we got a lot of questions, particularly about what it was like being younger with CF, and what it was like to grow up in to adulthood with it. We hope to do an updated video and really take in to consideration everyones questions. So that is where you guys come in : ) are there any topics, ANY at all, that you would like us to cover? and specific questions that you would like his perspective on? He's been through all the hormones and done the whole school thing and juggled treatments/doctors/medicine at the same time. this is his original video any questions would be helpful! i'll post the video back on here when its reordered and done : ) thanks in advance you guys, and take care. <3

  2. #2
    Junior Member
    Join Date
    Dec 2018
    I am a 24 year old male living with CF and I have a question. I have been let go from jobs time and time again for lack of being able to work due to CF. What are some good job recommendations for a CFer?

  3. #3
    Senior Member
    Join Date
    Sep 2016
    I know a lot of CFers have jobs where they can work from home or remotely. I don't know specifics, but I'm just sharing the knowledge I have.

  4. #4
    Super Moderator
    Join Date
    Dec 2011
    The best advice I was given regarding employment helped me a lot. 1. Always be worth more to your employer, than he/she is to you. 2. Assume 100% responsibility for everything you have been charged to do, even if it you are not fully in charge. 3. This is a hard one for me but try to be realistic in what you can accomplish given the issues of CF.

    The question I have is how many CFers battle GI dysfunction. How many live with a G-tube, and how long is it in place for any CFer?

    Best of luck,
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  5. #5
    Junior Member
    Join Date
    Apr 2008
    Great question! I work for state government in a position that is also Union, which is perfect for CF'ers like myself who when sick or need extended leave receive 100% of my pay and I can never be let go! I don't know what State you live in or what carreer path you working towards but I would look for a City/Town/State/Federal job with strong Union protectiom for its workers. I can testify it has been the best!
    Last edited by draz91; 01-24-2019 at 11:10 AM.
    43, Male w/CF
    Married with Twins

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