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Thread: Mixing with other CFers.. thoughts and opinions?

  1. #1

    Mixing with other CFers.. thoughts and opinions?

    Just wondering how people feel about mixing with other poeple with CF. I have a lot of CF friends,, one that lives just down the road from me and we meet up all the time and hang out. I don't care about the infection risks,, and neither does he..

  2. #2
    Dank
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    You should consult your doctor. This is a very bad idea that will likely lead to serious infections

  3. #3
    Senior Member
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    As someone who was alive and mingling w/ CFers before the days of isolation, it's not that dire. However you should be wary of any new bugs you guys culture or when you get sick. If one of you gets MRSA or cepacia keep your distance. And maybe keep the physical contact low. As a kid I would be hospitalized 3-5x per year, and they'd often put the CFer's in a big room w/ 4-6 CF patients, or we got our own. But we all hung out. I even dated a girl w/ CF when I was 17 that I met in the hospital. Not recommended, but I know younger CFers are freaked out by the thought of mingling w/ other CFers. It's not necessarily a good idea, but just take some precautions, sanitize your hands, etc. It can be pretty great hanging w/ someone dealing w/ similar issues. I know many who go by the 3-foot rule, try and stay 3-feet away, but keep in mind the CFF has gotten much stricter w/ their isolation policies. So just be careful, but enjoy yourself too.
    Eric 36 with CF

  4. #4
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    I'm sorry, but you couldnt pay be enough to be in a room with another CF adult without a mask on and a bottle of hand sanitizer nearby. I grew up with other CFers around, before the strict isolation policies, but my parents and doctor strongly urged me to stay away from the other kids with CF. I have watched (from a distance) all the other kids pass around the nasty bugs and then pass on. I'm sorry this sounds so harsh, as much as I disagree with the CFF on some of their policies, they have made the right call on the "keep your distance" from other CFers. My parents never let me attend CF events as a kid or go to CF clinics. I think that saved my life. I would strongly suggest listening to erock77's advice. Now that there are precautions at the clinics and events I will attend (masked and gloved), but the underlying advice is still sound.

  5. #5

    Oi

    Quote Originally Posted by xxlilmissmorrisseyxx View Post
    Just wondering how people feel about mixing with other poeple with CF. I have a lot of CF friends,, one that lives just down the road from me and we meet up all the time and hang out. I don't care about the infection risks,, and neither does he..
    I had a friend with CF and I was with him every Sunday, Wednesday, and Thursday. we were just careful like we always stayed at least 3 feet away from each other and if one of us was sick we would try to stay away from each other. My point is I don't think it really matters as long as you're both healthy.

  6. #6
    Junior Member
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    Sep 2016
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    let me just say how I live by what my daughters doctor tells me and his idea is NO it is a bad idea.

    I was able to connect with a few mothers of cf kids in my area and lets just say how I was completely bullied by being OVERPROTECTIVE and not letting my daughter interact face to face with the other cf kids. They thought It would be a great idea to have slumber and pool parties. When I told them I have been advised by the doctor not to I was completely shunned. I don't feel like I know 100% about the condition to take the risk with my daughter

  7. #7
    Senior Member
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    In the 1960's, CF kids would go to summer camp and sleep in large rooms. As a result infections were exchanged between these kids. Twenty years ago we had the "three foot rule", CF Patients could not be within 3 feet of each other, now that rule has been extended to six feet. I was dx in 1987, at that time CF Patients and families would attend the Cystic Fibrosis Annual Dinner. Today, only one (1) CF Patient is allowed to attend this dinner, which is held in a function hall that will serve almost 700 people.

    Your Doctor is WRONG when he tells you that "slumber and pool parties is a bad idea". It is forbidden. Don't allow your DD to violate the six foot rule.

    Bill
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  8. #8
    Senior Member
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    CF patients can spread germs to each other. Which makes the stuff growing in our lungs more difficult to treat and more prone to infections. We SHOULD NOT be in contact with each other. Masks must be worn at all times if we are sick or healthy around other CF patients or in hospitals / clinics. When in doubt, stay away. However, online interaction with other CF patients is encouraged. It's nice to be in contact with people who are dealing with the same thing you are and are a great support system to each other.

  9. #9
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    good to know! Glad I stayed away from those play dates. I don't know what people are thinking..

  10. #10
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    I am an identical twin, and we both have CF (delta F508). Needless to say neither of us stay 3 feet from each other at all times, nor do we avoid eachother when we are sick. Now, this may be a different case, as we grew up together and have always been decently healthy (him more so than I) throughout our lives. So I'm not really sure if that's a difference in immune system strength, or genetics, but I think you'd be okay.

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