This REALLY annoyed me

[Diane]

I went for my checkuop yesterday and when i got there, they had me go into the room with the big machine with the tubes to do my pft's. Normally i use the handheld one ( i guess because i have b.cepacia) Well anyway i asked right away why im using this one when i never usually do since i have cepacia and the respiratory therapist said, well its ok since we saved you for last. No-one will catch anything from you that way, I told her to be honest i dont want to be breathing into tubes that everyone else there that day before me with cf has breathed into and she said, once again, that its ok, they saved me for last so no-one would be in any danger of getting anything from me. I told her that i am more worried about catching something from THEM!<img src="i/expressions/face-icon-small-mad.gif" border="0"> Having b.cepacia makes me more vulnerable to catching things , from others....but all she was worried about was what i could spread not even giving a thought to the fact that I could get something from everyone else. I reminded her there is MRSA out there and all kinds of staph amongst other things that might be a problem for me. It just amazed me that when you have b.cepacia , everyone guards against you're possibly infecting others ,but noone gives a crap about guarding the poor cepacia patient getting something else from everyone else. ok my rant is over............lol I feel better now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[abloedel]

Diane - that would really make me mad too. I don't culture cepacia, but lots of other things, so I try to minimize risk to me from others as well as risk to others from me.

It should TOTALLY be a two way street! I hope you're going to complain to the clinic about that so maybe they'll rethink their procedures!

 

[anonymous]

What is the normal procedure for testing? Shouldn't they change out stuff anyway for each person?

DS is still too little for that, but I'm already starting to worry 'cuz of the way the local CF clinic runs things -- community waiting room, sending us all for Xrays and labs at the same times...

 

[anonymous]

Diane,

As far as I know, all the tubes, mouth pieces are changed for every patient.... are you sure they hadn't done that, and the tech was talking more about room air, by saving you for last?

I am post lung tx, and worry about catching stuff from the PFT lab. I am scheduled first in the morning. At my tx center I know I am not first and I was worried about the machine. The PFT tech explained that none of the tubes are reused for patients. If they say " we change them", ask to have them changed in your presence.

Some techs I don't think understand or even know what they are doing.... they are doing it rote and that is all they know.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

I know how you feel, Diane.
I have Cepacia too. It's like sometimes I feel like a leper!
When I'm in the hospital, it's even tougher. I feel like an astronaut. My doctors, though are constantly bringing up that b/c of my cepacia, I need to be extra careful for myself too, though. They are always very concerned about me waiting in x-ray, for example, so I dont' catch anything. Sorry! That wasn't very nice of that technician.
Maybe make a complaint to your doctor? Or gently bring it up as a concern of yours at your next visit.
If it's a concern, you need to tell your doc, though. Maybe if enough of us voice that, it'll come up at a CF convention or something. It's a legitimate concern.

Christian

 

[anonymous]

GRRRRRRRRRRRRRR
I'd be mad too. Advocate for yourself. You have to. I have to be a bitch a lot but if not I'd never get my way. And It's MY health I'm dealing with. No room for error.
You could call the social worker or one of the higher up people and make a complaint. That is not right that they didn't even treat you with dignity!
KELLI

 

[anonymous]

We've walked out of appointments because of lax germ prevention. We warned them several times we weren't going to sit in a community waiting room. They promised to assign us to a room asap---sat in the hallway for half an hour and finally said we'd have to reschedule. The doctor later called and apologized to us. Now when we arrive they get us to a room asap, but I'm still amazed at all the people who still sit around the waiting room and socialize.

I did read about a clinic in California that changes out the filters and mouth pieces for each patient, but didn't say anything about tubing. They also require gowns and masks. SOmething our hospital RTs should do instead of wandering from room to room for CPT with the same bottle of albuterol, same clothes... All they do is wash their hands with antibacterial foam.

 

[Diane]

I forgot to mention that after a LOT of convincing , i finally agreed to do it on that big machine after she changed the mouthpiece with the filter in it, in front of me. I have decided i will not cave in next time ........and after all the hoopla i made about it yesterday ,they probably wont ever ask me to do it that way again. It just irritated me to no end that they were soooo concerned about every one else BUT me. HAAaaaLLLLOOOOooooooOOO, i may have cepacia, but id like to NOT get anything else if i can avoid it.

 

[ClashPunk82]

Wow where I live they stopped using the big machines. Now what they do is bring in a laptop into your room and they give you a throw away mouth piece that has it's own tubing so no one else has touched it. They have really gotten strict with everything. You go right into a room and no one comes in w/o their gowns and gloves. It makes me feel a lot safer.

 

[Emily65Roses]

That's rude. It's like they're saying "Oh, well you already have cepacia, so there's no point in trying to protect you from anything else. With cepacia, you're no longer worth it." They do need to protect people from you, yes, but that doesn't mean they can ignore your safety. Ridiculous.

 

[JustDucky]

Oh Diane, I feel your frustration....when I am hospitalized in my small community hospital (usually for IV's), many the RT's have no CLUE what cepacia is and how bad it can be for others if they don't practice good handwashing technique or isolation protocols. I have literally seen them go room to room just putting the foam on as well, even saw one of them NOT wash his hands! Freaked me out, I had my sister make a huge sign to put over my bed that said to "wash your hands before and after". One time I saw my nebulizer stuff hanging, not in a bag or anything but dragging on the floor......I was angry and had a chat with the doctor who also wrote a sign above my nebs as well as provided a bag. It's pretty bad when you have to remind the RT staff to clean the neb kits...some are pretty good about it, but there was this one person who kind of grossed me out.
Most times I go to the hospital where my pulmo is located, they really have it together there...the RT's are awesome and very concious about spreading cooties. I don't do the PFT's anymore because of my vent, but I do remember going through them every 3 months. The RT who did it made it a point to change the filters right in front of me. This was at UCONN, I really liked them alot.
Monday, I actually go to a CF center for the first time, when I go I was instructed to put a mask on both my mouth and trach because of my cepacia, I have absolutely no problem with that...I do not want other CF'ers to get that cepacia. Hey, what does the first CF visit entail? I know a sweat test will be repeated but who knows what else will be done. I was told I would be there at least 2 hours for this visit. I just want to get an idea what the docs will do....Thanks in advance to those who answer that question.
Was just up in Albany Med today (that is where my CF clinic is) to see my neuro, he wants to do an EMG on my legs and wherever else, but not till February. He really is a sweetie and tries not to hurt me, I hate EMG's...they basically stick you with needles in your muscles and pulse small currents of electricity through them to see how the nerve and muscles react to look for pathology, he just wants to see what kind of progression has occurred...So NOT looking forward to that test!!!!. That test ranks up there with a cardiac cath with me, I hate them that much.
Diane, I hope that they don't do that to you again...that cepacia with the other nasties is bad enough, but if they can help prevent the spread of those bugs then they should be extra careful!
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I agree on the big OLD machines-I wonder what kind of filters, if any, are used on them since probably when those machines were made, cross infection wasn't such a big deal as it is today. I don't blame Diane, I don't like those big machines either & at my clinic, they don't change the tubing on the laptops either after each testing, they just have us use different disposable mouthpieces that have a paper filter in them that is supposed to catch all germs. They claim they change the tubing each morning.
Hope

 

[teknogeek1300]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Diane</b></i><br>I forgot to mention that after a LOT of convincing , i finally agreed to do it on that big machine after she changed the mouthpiece with the filter in it, in front of me. I have decided i will not cave in next time ........<hr></blockquote>

Phew, I was getting scared. Reading your original post I was getting mad at that doctor. I'm glad you re-posted and mentioned that <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

My hospital only HAS the big machine. Which does worry me, they change the mouthpiece but what about all the 'stuff' in there that others have breathed in. Eww. I'm afraid I'll get something. I'm not happy about this. I like the PFT ladies so I'll just ask them what is up with that. Thanks for bringing it to my attention.
Kelli