I was treated like a freak

Enzo2311

New member
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
 

nmw0615

New member
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.
 

jaimers

Super Moderator
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!
 

ethan508

New member
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.
 

imported_Momto2

New member
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!!!!"
 

Gammaw

Super Moderator
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!
 

Aboveallislove

Super Moderator
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.
 

Ratatosk

Administrator
Staff member
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.
 

2roses

New member
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 ...
 

Gammaw

Super Moderator
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.
 

Gammaw

Super Moderator
I know . . . for the kiddos, write "Ninja in Training" on it and bring their nun chucks! Any other suggestions?
 

Aboveallislove

Super Moderator
Okay, we're totally going to do the bad piggies from angry birds as we have green masks and a few black snot marks will do the job!!!
 

Gammaw

Super Moderator
Here's a thought - kids, preteens, and teens often feel very comfortable wearing full face masks. They're primed for it by Halloween and crafts made in school, etc. I wonder if you could make a FULL face mask in fabric, sporting a character they would enjoy, but which would perform the same function as these half face masks - keeping germs in and out. More than once I've had a child sport their cape and mask or school made holiday mask into stores and while otherwise out and about. They love it. Even teens could go "goth" or sport a skeleton or Enderman, etc. Then you could take it home, wash it, and reuse. I'll have to check with the docs on the permeability of various fabrics by all those little germs we're trying to avoid. . . .
 

Aboveallislove

Super Moderator
That's a grat idea, but nt sure hat is needed for th germ control.. We actually use the n30 masks because my research indicated that those work better than the plain ones masks and I want to say cff said evidence was inconclusive on the need which I think means there is some evidence n30 masks work better. Ds was young enough when we started that it neither bothers or fazes him.
 

LittleLab4CF

Super Moderator
First, I'm sorry that you're feeling singled out or profiled. My first thought was to draw a mouth on it just to be contrary. It seems like it wasn't an original idea. You could move to Asia. When I first traveled to Japan and other coastal areas of the Orient, it was like fashion to wear hospital masks.

Some of the masks had obvious functions like working in a toll booth, avoiding the ever present soot from charcoal used to heat small homes/apartments and diesel exhaust. Mostly Asian's seem to hate dust or any itchy feeling in the nasal pathway. I'm not Asian but I was really surprised how many Asian friends made identical remarks about this sensitivity. It's a big deal for many. It's a lot more polluted too. Not to pick on China but from 1984 until I stopped international travel in 2000 China's economy has grown annually, in double digit increases in GDP. The coastal countries east of China are more or less down wind. From 1990 on, I saw the sun in Seoul once in the total of a year's worth of visits. By 1995 everybody wore masks. You could see the smog billowing over the gigantic Han river that ran through Seoul.

Back when SARS virus was at threat levels similar to the current (idiotic) horse out of the barn climate currently going on with Ebola, big signs were going up in ED's and hospitals asking to report any travel to Africa and a form you fill out with more questions about this potential travel. The news will die down, signs will be removed and life will go back to ignoring travel information until the next super bug shows up in Shanghai or Phuket, both places among a hundred I've been to that is the stuff of nightmares for epidemiologists.

During the SARS scare I remember watching a live news broadcast from the international terminal's last desk, quarantine, before foreign flights first walked onto American soil, or carpet in this case. The report was embarrassing. A Korean Air flight had deplaned its passengers and the reporter were in the spotlight with the lonely quarantine desk sat with one attendant. The reporter was acting incensed over the lack of action. Just as a woman was walking by wearing a surgical mask she pointed at her, and the spotlighted camera followed as she expressed "Like why aren't they checking this woman"? Where's Heraldo Rivera when you need him, Asians and smart travelers that are accustomed to the super humidity of coastal air, conserve moisture loss with a cloth or mask while in the 10% relative humidity on a 14 hour flight. Landing in Denver is no improvement with our high altitude, dry hard boogers have been part of a cultural lecture when we had foreign visitors from coastal regions. My point is at least in the clinic, everybody knows it is smart to wear a mask. You don't need to educate the whole world. That's why we have Heraldo.

I no longer wish to travel but when I did, international travelers were generally quite savvy with regard to what epidemics and health issues are happening in the countries we planned to visit. International travelers are usually vaccinated against many more diseases than the average person and we know when a region has a problem, information and warnings are printed and distributed prior to arrival and again during the departure journey, presumably back to one's home country. The forms asked for details of travel, counties visited, contact with animals or agricultural levels of plants, visited farms, ranches or plantations and so forth. It also always included a warning to seek medical attention with symptoms described in the form including proper protocol like calling the CDC or equivalent in each country first, including the phone numbers.



Caution is running high. One of the more common problems with clinics, hospitals and doctors offices is infectious diseases that patients are in to have taken care of. Duh! We are aware of this but like the concept of hospital isolation, most people don't realize that isolation is for protecting the patient and rarely to protect the healthy and unhealthy on the outside. I really wish I could offer a better solution. You are sensitive to how you believe people feel or act toward you. You are also pretty brave to express your feelings about things you are sensitive about. Every dog has his day if that is any comfort. We all eventually suffer the same little indignities. My experience has been that it only takes one good face plant to soften a judging gaze.

LL
 
C

cfgf28

Guest
When my fiance goes to the clinic, which is a wing of the hospital, he has to wear a mask, and it does feel embarrassing. And he's almost always the only one singled out and told to wear one. He's seen in a lung clinic, but they see patients with asthma etc...I've seen maybe 1 or 2 other people with a mask when we've gone...I get it, but it still makes you feel weird. What really bothered me was when the receptionist was coughing, choking etc, clearly sick, and not wearing a mask....and takes forever to check you in, scan your insurance cards etc. I really wanted to say maybe you should be home since your clearly sicker than the patients.
 
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