Not Satisfied

LouLou

New member
sorry that first link doesn't work - I can't find it on the web - PM me and I'll email it to you or contact CFF national office and ask them to email it to you. That's how I got it.
 

CaliSally

New member
LouLou,
Thanks for the info, good stuff to know. I thought it was a mandatory thing for the centers to be compliant, especially if accredited.

I go to . in California - they get an A+ for germ control. Though during hospitalizations, sometimes the nurses don't comply (wearing the full gear) and neither do all the R.T.'s. But if I tell the charge nurse she will see the word gets passed.

I have one semi resistance bug (I don't know the technical term) and they gown up to come in my room during clinic. That makes me feel safe, especially for the other patients - they won't be getting what I have.

As for pft's - we all use the same room, however, they do wipe down EVERYTHING after each patient - the chair you sit in, the keyboard they use, and they change mouth pieces, (though that tube is the same, so not sure about how I feel on that.) They also gown up.
 

CaliSally

New member
LouLou,
Thanks for the info, good stuff to know. I thought it was a mandatory thing for the centers to be compliant, especially if accredited.

I go to . in California - they get an A+ for germ control. Though during hospitalizations, sometimes the nurses don't comply (wearing the full gear) and neither do all the R.T.'s. But if I tell the charge nurse she will see the word gets passed.

I have one semi resistance bug (I don't know the technical term) and they gown up to come in my room during clinic. That makes me feel safe, especially for the other patients - they won't be getting what I have.

As for pft's - we all use the same room, however, they do wipe down EVERYTHING after each patient - the chair you sit in, the keyboard they use, and they change mouth pieces, (though that tube is the same, so not sure about how I feel on that.) They also gown up.
 

CaliSally

New member
LouLou,
Thanks for the info, good stuff to know. I thought it was a mandatory thing for the centers to be compliant, especially if accredited.

I go to . in California - they get an A+ for germ control. Though during hospitalizations, sometimes the nurses don't comply (wearing the full gear) and neither do all the R.T.'s. But if I tell the charge nurse she will see the word gets passed.

I have one semi resistance bug (I don't know the technical term) and they gown up to come in my room during clinic. That makes me feel safe, especially for the other patients - they won't be getting what I have.

As for pft's - we all use the same room, however, they do wipe down EVERYTHING after each patient - the chair you sit in, the keyboard they use, and they change mouth pieces, (though that tube is the same, so not sure about how I feel on that.) They also gown up.
 

Diane

New member
Kelli, i fully understand your point. Being a cepacia patient myself, i wouldnt even WISH it on anyone else, and it is so easy for a nurse or receptionist to have a lackadasical attitude when it comes down to being careful . After all if YOU sit next to ( or close enough) to someone with cepacia ,it wont hurt them ( the nurses etc.) one bit. A while back i had a problem with the RT wanting me to do my pft's out of the same machine everyone else uses.
One.... i am worried about what i can spread to others without cepacia
Two.... i am worried about what i can get from others since i have cepacia
The RT kept telling me over and over that i have nothing to worry about, because they change the mouth pieces and each new mouth piece has a filter and there is no worry about me getting anything from the machine. I pointed out that they never change the tubes and she said they didnt need to since each mouth piece has a filter. I then asked why they werent worried about my being in the same room as others before who may have other bugs that i dont have, or vice versa and she said" well thats why we kept you for last.. so noone would be at risk of getting cepacia" I was like WHAT?????????
If there was NO chance of a problem like she kept insisting.... why keep me for last? AND what about ME who has cepacia, I am also at risk of getting other bugs that others have.... I guess no-one cares about THAT. Needless to say i refused to use that machine again.
When i go to the doctors, i tend to open my chart when she leaves ( or before she comes in the room) or sometimes when she is there ,and look at my last cultures and stuff like that. Im just nosey and i like to see whats what for myself.........lol
 

Diane

New member
Kelli, i fully understand your point. Being a cepacia patient myself, i wouldnt even WISH it on anyone else, and it is so easy for a nurse or receptionist to have a lackadasical attitude when it comes down to being careful . After all if YOU sit next to ( or close enough) to someone with cepacia ,it wont hurt them ( the nurses etc.) one bit. A while back i had a problem with the RT wanting me to do my pft's out of the same machine everyone else uses.
One.... i am worried about what i can spread to others without cepacia
Two.... i am worried about what i can get from others since i have cepacia
The RT kept telling me over and over that i have nothing to worry about, because they change the mouth pieces and each new mouth piece has a filter and there is no worry about me getting anything from the machine. I pointed out that they never change the tubes and she said they didnt need to since each mouth piece has a filter. I then asked why they werent worried about my being in the same room as others before who may have other bugs that i dont have, or vice versa and she said" well thats why we kept you for last.. so noone would be at risk of getting cepacia" I was like WHAT?????????
If there was NO chance of a problem like she kept insisting.... why keep me for last? AND what about ME who has cepacia, I am also at risk of getting other bugs that others have.... I guess no-one cares about THAT. Needless to say i refused to use that machine again.
When i go to the doctors, i tend to open my chart when she leaves ( or before she comes in the room) or sometimes when she is there ,and look at my last cultures and stuff like that. Im just nosey and i like to see whats what for myself.........lol
 

Diane

New member
Kelli, i fully understand your point. Being a cepacia patient myself, i wouldnt even WISH it on anyone else, and it is so easy for a nurse or receptionist to have a lackadasical attitude when it comes down to being careful . After all if YOU sit next to ( or close enough) to someone with cepacia ,it wont hurt them ( the nurses etc.) one bit. A while back i had a problem with the RT wanting me to do my pft's out of the same machine everyone else uses.
One.... i am worried about what i can spread to others without cepacia
Two.... i am worried about what i can get from others since i have cepacia
The RT kept telling me over and over that i have nothing to worry about, because they change the mouth pieces and each new mouth piece has a filter and there is no worry about me getting anything from the machine. I pointed out that they never change the tubes and she said they didnt need to since each mouth piece has a filter. I then asked why they werent worried about my being in the same room as others before who may have other bugs that i dont have, or vice versa and she said" well thats why we kept you for last.. so noone would be at risk of getting cepacia" I was like WHAT?????????
If there was NO chance of a problem like she kept insisting.... why keep me for last? AND what about ME who has cepacia, I am also at risk of getting other bugs that others have.... I guess no-one cares about THAT. Needless to say i refused to use that machine again.
When i go to the doctors, i tend to open my chart when she leaves ( or before she comes in the room) or sometimes when she is there ,and look at my last cultures and stuff like that. Im just nosey and i like to see whats what for myself.........lol
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>

The RT kept telling me over and over that i have nothing to worry about, because they change the mouth pieces and each new mouth piece has a filter and there is no worry about me getting anything from the machine. I pointed out that they never change the tubes and she said they didnt need to since each mouth piece has a filter. I then asked why they werent worried about my being in the same room as others before who may have other bugs that i dont have, or vice versa and she said" well thats why we kept you for last.. so noone would be at risk of getting cepacia" I was like WHAT????????? </end quote></div>

This is one of my concerns too....Oh, and who's telling them that those filters catch 99 or 100% of germs, the manufacturer? And let's be real, do you think the manufacturer would actually come out & say, "Well, the filters only catch 70% of the germs, but hey, those are pretty good odds" if that were the case? I just hope that they really do catch 100% of the germs.
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>

The RT kept telling me over and over that i have nothing to worry about, because they change the mouth pieces and each new mouth piece has a filter and there is no worry about me getting anything from the machine. I pointed out that they never change the tubes and she said they didnt need to since each mouth piece has a filter. I then asked why they werent worried about my being in the same room as others before who may have other bugs that i dont have, or vice versa and she said" well thats why we kept you for last.. so noone would be at risk of getting cepacia" I was like WHAT????????? </end quote></div>

This is one of my concerns too....Oh, and who's telling them that those filters catch 99 or 100% of germs, the manufacturer? And let's be real, do you think the manufacturer would actually come out & say, "Well, the filters only catch 70% of the germs, but hey, those are pretty good odds" if that were the case? I just hope that they really do catch 100% of the germs.
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>

The RT kept telling me over and over that i have nothing to worry about, because they change the mouth pieces and each new mouth piece has a filter and there is no worry about me getting anything from the machine. I pointed out that they never change the tubes and she said they didnt need to since each mouth piece has a filter. I then asked why they werent worried about my being in the same room as others before who may have other bugs that i dont have, or vice versa and she said" well thats why we kept you for last.. so noone would be at risk of getting cepacia" I was like WHAT????????? </end quote></div>

This is one of my concerns too....Oh, and who's telling them that those filters catch 99 or 100% of germs, the manufacturer? And let's be real, do you think the manufacturer would actually come out & say, "Well, the filters only catch 70% of the germs, but hey, those are pretty good odds" if that were the case? I just hope that they really do catch 100% of the germs.
 

Kelli

New member
~Original Poster~
Is there any website to find what exactly the CFF demands a hospital (CF center)to do for infection control. I tried 'googling' it but didn't come up with anything helpful and LouLou's link didn't go anywhere for me.
Thanks,
KELLI
 

Kelli

New member
~Original Poster~
Is there any website to find what exactly the CFF demands a hospital (CF center)to do for infection control. I tried 'googling' it but didn't come up with anything helpful and LouLou's link didn't go anywhere for me.
Thanks,
KELLI
 

Kelli

New member
~Original Poster~
Is there any website to find what exactly the CFF demands a hospital (CF center)to do for infection control. I tried 'googling' it but didn't come up with anything helpful and LouLou's link didn't go anywhere for me.
Thanks,
KELLI
 

Ratatosk

Administrator
Staff member
I don't think there are demand per se. I know they have a few publications on germ control, etc.
 

Ratatosk

Administrator
Staff member
I don't think there are demand per se. I know they have a few publications on germ control, etc.
 

Ratatosk

Administrator
Staff member
I don't think there are demand per se. I know they have a few publications on germ control, etc.
 
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