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Thread: I was treated like a freak

  1. #1
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    Talking I was treated like a freak

    So regulations apparently say that I must wear a mask in the cf clinic and anyone who's in contact with me must wear a full gown, mask, and gloves. Like I have the worlds first zombie plague lol

    its actually very depressing. Anyone else feel the same way? New regulations btw

  2. #2
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    I was treated like a freak

    This has been standard for me for a while. Maybe I'd feel singled out if I was the only patient that had to go through this, but that's not true. All of this is done to try and control and prevent bacteria from spreading. Hospitals and clinics are basically giant Petri dishes of disgusting bacteria. I'll take any precaution I need to to keep my bugs with me and everyone else's bugs with them.

  3. #3
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    This has been the standard protocol for quite a number of years at the two CF clinics I've been to. It can seem kind of intense but like now said it's actually to protect us and other CF patients from spreading bacteria to each other. Hospitals are actually really germy and I picked up several of my strains of bacteria from the days when there was no cross infection protocol like this and I would play in the hospital rooms of other CF patients while we were all in for clean outs at the same time.
    I'm surprised your clinic hasn't been doing this before now honestly!

  4. #4
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    I got a letter from my clinic a few weeks back that requested that any patient that is culturing something is strongly encourage to wear a mask to protect others. And those who weren't culturing should wear a mask to protect themselves. They explained it as a new effort at infection control. I hadn't worn a mask before but I will now. I've never wanted to be the guy in the mask, my smile/teeth are one of my best features and covering that up is a shame. At least they allow me to take the mask off once I'm in a private room.

    I have a neighbor who is going through Chemo for leukemia, and he wears a mask every time he's out it public. He found some camo pattern ones that fit his personality better than the sterile hospital blue. Before his first chemo treatment I had a little conversation over the fence and told him I cultured Pseudo and Staph and we'd need to keep a physical distance for our best health. I told him instead of handshakes or fist bump it be best if we switched to air fist bumps and kept our conversations to telephone email or a 6 ft distance. It kind of sucks because we are decent friends, but I would hate to be the one to give him (or anyone else) an infection that caused his decline.
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  5. #5
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    This is standard protocol at our clinic and I am THRILLED by it. In fact, if they werent so careful, I'd go elsewhere. Since you have such a high FEV1 Enzo, they are primarily doing it for YOUR benefit, so people with CF who are a lot sicker dont infect you. I wont even walk in my local GP's office to pick up a script w/o a mask and copious hand sanitizer. I see the new regulations as "thank heaven someone finally saw the light!!!!"

  6. #6
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    I can sympathize. My little guy was appalled when they told him to wear a mask. It's a long walk from the front door to the Clinic and he felt like everyone was staring at him. So I donned a mask too, but that wasn't quite enough for him to feel more at ease. Now I bring a sharpie and decorate my mask with drawings and funny faces. It's still not quite enough to get him comfortable but he will just have to get used to it! I love the idea of a camo mask and will look for them. I've always wondered how the heck they thought they were controlling transmission of infections with everyone wandering around the waiting room. That's really nuts. I used to make us stand over in a corner or as far away as I could get from others. A mask makes extreme sense! Frankly they should make everyone in the hospital don one coming thru the door!

  7. #7
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    We actually started doing it about a year before the guidelines after it dawned on us one day...everyone here is coughing! Our center is in the hospital complex so they actually require masks for anyone entering who has a cough...and ask as you enter if anyone has couch, cold flu etc and then hand masks to anyone who says yes.

  8. #8
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    I'd actually prefer it. Our old cf clinic had a small tiny waiting room with toys/play area. Patients would go from room to room rather than the medical staff. We were told we were overreacting and treated like freaks for the opposite reason. We were so concerned with the cross contamination issue we stopped going there.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  9. #9
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    Enzo, my kids don't love wearing the masks, but as others have so eloquently said, it is for all patients' safety to do so. I know you feel conspicuous, but really most people are only briefly curious and then they go back to thinking about themselves. Human nature. You'll get used to wearing them. It doesn't mean anything about who you are. You're good, dude ...

  10. #10
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    Ya know, I don't love wearing the masks either. They're hot on your face. They make it harder to breathe. But . . . . I'm reminded that there are two ways to look at most things. You can balk at it, moan about it, feel bad, slink to your appointment hugging the wall with your head down, or . . . . Have fun with it. Turn the attitude around. Ya gotta wear it. Why not enjoy it? Make an old timey Groucho Marx face on it! Draw a lollipop going into your mouth on it. Draw attention to yourself - flaunt it - maybe write on it - "I don't want your germs, do you want mine????" or "Masks are cool!" or "Guess who?" They'll think you're a celebrity in hiding. At least for a minute. Sing through your mask while you walk. Draw attention to yourself - don't hide. Have fun with it.
    Blessings.

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