I was treated like a freak

Gammaw

Super Moderator
AboveAll - thanks for the helpful OSHA link. I hope you don't mind me posting some of the details here, for ease of reading. The OSHA summary distinguishes between "respirators" (those hard mask coverings for the nose and mouth) and "surgical masks" (the masks we don at the CF Clinics). It seems that generally the surgical masks are designed to limit the transmission of "infectious respiratory secretions to others" but do not generally limit the "inhalation of small airborne contaminants". Apparently only a properly fitted and well chosen "respirator" can do that. That's good to know. It also explains that a surgical mask's "ability to filter small particles varies significantly based upon the type of material used to make the surgical mask, so they cannot be relied upon to protect workers against airborne infectious agents." They must also be FDA approved to be marketed as surgical masks. I can imagine that drawing on them with innocuous agents would not be a problem, but I wonder if some of the decorative ones are actually made out of materials suitable for a CFer's purpose. I recognized that some of them were marketed as face warmers for people in winter - which is obviously not the purpose we seek. It makes sense to me to check with your CF Clinic or health care provider to see if your homemade or purchased decorative mask meets the requirements!
 
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daniela.l

Guest
You get used to wearing the masks. I've had to wear them inside the hospital hallways and clinics since I was around 7 years old. I'm 18 now and the gowns and masks people have to put on to see you started when I was around 11 or so. At first I did feel singled out and almost like they didn't want to get near me. But since the last two years or so, I've made sure every nurse that sees me has at least gloves on. I am very susceptible to any type of infection. I had my transplant last December and since then, I've been even more cautious with the people who come near me since my immune system is so low.
It may not be easy to see the people in gowns, but it is for your own good! It is worth it so no new bacteria or virus comes near you!

catchingyourbreaths.wordpress.com
 

zaj1139

New member
At Childrens Hospital in Atlanta it has always been that way for my grandson and he doesnt seem to mind at all. In fact if we forget when he is inpatient he knows where in the hallways to get one. I guess it is all to what you are use to but it is a good thing!
 
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windex125

Guest
I wear them as well sometimes to other doctors offices, as once you start coughing everyone else starts lookg, then they start to offer a candy or water. This way the mask makes me feel comfortable and sure even though you get the looks but I don't mind anymore. My past saying was severe asthma, algeries, a few times I said CF and people still do not know what that is but they do know CPOD because it's so advertised, so that's my new one as going for physical therapy for my broken wrist from Feb. mentioned the CF which is at the top of my medication list, as I just ask them to make a copy for where it says are you on any meds. The flwg. day someone said are you sick, am I going to get yr. cold/cough AHHHHH I just say NO I have CPOD then they say oh were you a heavy smoker? I then cgh the subject. I do what works for me with as little explanation as possible. Pat/60
 
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GoryLori

Guest
Masks, gowns and gloves has been my norm for 5 years now at Duke. It's old news. Nothing new. When I first cultured the nasty CF bugs, I was asked NOT to attend the CF clinic anymore!! They were terrified I'd be the "Typhoid Mary" of the CF waiting lounge and so I have not gone to CF Clinic for 5 years since. I now email my care givers and get a direct admit for tune ups, but no clinic. I was stunned by this new direction in infection control and felt I was being singled out as a CF Leper.....but it became UNIVERSAL for all CF patients and after some tears over it, I saw why it was necessary...after all, I caught these CF nasties from another CF patient...so why share the love and pass it on?? Now it's acceptable and the norm to mask, glove and gown. So life goes on....
 
GoriLori - What a shame that you were treated like that. I would change CF clinics, some clinics have no human compassion. You could wear a mask just like everyone else and they could schedule you at the end of the day- but at the same time - you don't want to catch anything another person with CF has culturing in their lungs either! You are just as important as they are! I understand the "leper" feeling and its a very difficult thing to feel. To be honest from what I have come to know the "worst" bacteria out there sometimes just "sits" there. People live very long lives and full lives still and the people who are dreading the worst bacteria sometimes have more trouble than the ones that have the "worst". So with that being said, you do not want to catch anything else anyone else has just as much as they don't want to catch what you have so that is the reason for the masks - which you already know. I would hope you could find a different CF clinic that has a bit of human compassion and decency.
 
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The Dot

Guest
Masking in public

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
I'm not a CFer. I'm an RT (Respiratory Therapist). But, I am on multiple immunosuppressants for auto-immune disease, and decided that I was sick and tired of getting sick and tired every time I traveled by air. So, when I traveled from Texas to Florida for a COPD conference last November, I donned a surgical mask. I had planned to draw a funny face on it, but ran out of time. As you will recall, last November we were at the height of the Ebola scare, so I got looks! So, I immediately said to everyone I met, "I'm not sick, I just don't want to be." After that, they relaxed. In fact, I met too young girls who made me laugh the whole trip with their hilarious stories. They even offered to buy me a drink, but I take so many meds, I prefer to preserve my liver as best I can ;) My point is, I think it is fear and ignorance (and maybe just a bit of natural curiosity) that drive most people to stare. I admit, when I see something that is not the "norm", I have a hard time not turning my head for a second glance. But, I hope you will take the opportunity to educate people and to put them at ease about CF. Otherwise, you might miss out on meeting some of the most fun people in the world!

God Bless!
 

Aboveallislove

Super Moderator
Dot,
What a nice way to put it!
It's really strange here because our son barely gets a glance walking through the hospital (where the clinic is), even though very few wear masks. The ones that might look are typically very young kids and I always try to make it "normal" with him (and them), not taking offense and saying something like "they see your mask. I bet they wonder why you have a mask on. You do a great job keeping your lungs healthy by wearing a mask at the hospital." And I try extra hard not so their parents don't feel bad....they're kids they're curious. (And I hope for the same benefit of doubt for instance when DS screams loudly like yesterday as the delivery guy carries in his drink supplement, "hey the Walgreen's guys' head is all bald."
 

lilro

New member
I'm not too upset about it because I understand the logic, but what makes me the most upset is that these precautions are taken to protect other people, but none were taken to protect me. My biggest issue with my CF has been since I cultured MRSA, which I got while IN the hospital, for a "routine tune-up" that every CFer goes through. I wasn't even sick at the time, just a little underweight. It has given me a sense of resentment towards most medical authority because of it. And I really hate I had to be cursed this way.


Sorry for the vent, going through "things" right now.
 

Imogene

Administrator
Hi Lilro,
Thanks for venting here! It is so true that for CFers the risk of infection in a simple hospital visit is very real and MRSA is big to contend with. You are not alone as this has happened to many of our members and they struggle.
I listened to Mark Nepo at the Open Center last night in NYC. He was introducing his latest book: "Inside the Miracle" enduring suffering, approaching wholeness.
Someone asked him about a section in another one of his book about needles
http://marknepo.com/books_seven.php
And he referred to the book Page 11 and then began to tell the story of how shabbily he was treated in the hospital on that day...the nurses were even laughing at what a horrible job they had done...and I remember he said:
That is one thing he made the decision to never again do...allow himself to be treated without dignity or expertise. He expects the Health Care Provider to share their expertise and know what they are doing...but NEVER to not give good care or to give opinions about "how long he would live" and such ( he had serious cancer in his early thirties)

Anyway, I hope that your center/ or the hospital where you were treated knows how you feel, how you were treated and what the consequences are. They should hear this from you.

This is why for this community, Telemedicine is so important!
Thanks again for this "vent"
Salt and light,
Jeanne
 
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welshwitch

Guest
Enzo, I am with you in that I absolutely HATE HATE HATE the mask thing and being singled out. I feel totally like a leper and really resent it. I get the logic, too, but that doesn't negate our feelings. Sometimes it's OK to really hate something, and this is that for me.

There are some things in life that just aren't fair, and this is one.
 

Aboveallislove

Super Moderator
Had DS's semi-annual GI and my heart melted as another mom who prior chit-chat comment to me to the side "I get the mask thing...our son is a survivor" (10 year old was with her without one now), later when she saw DS said to him: "hey dude, I like your mask." DS doesn't mind it at all or feel self conscience, but it was so incredibly kind of the mom to make the effort to kindly give him kudos for something that she likely remembered being hard on her son.
 
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kenna2

Guest
The glove, gown, and mask is all I've really ever known. Here's how I think of it, we are special and doctors and other providers have to "dress up" to see us, in their best yellow gowns and masks. Personally I don't mind wearing a mask. If it keeps me off meds and out of the hospital, I'm all for it.
 

SunnyBunny9600

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
I know it seems like we're kind of treated like aliens but, it's just to keep us and other CFers safe from our germs and their germs from us. It is hard when they come in all suited up but, it's what you make it you can be happy and think "they're just keeping me safe." or you can be sad and thing "they hate me because of this thing that I was born with it." I don't know about you but, I want to be happy. If you ever need to talk you can message me I'll try to be on at least once a day.
 
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