Cepacia Clearing House?

[harvey]

Is there any advantage to listing hospitals that might have Cepacia
lurking around and where Docs/nurses/waiting rooms may not be
making a best effort to adhere to the highest standards to
prevent transmission?  I've heard that a clinic in Eastern
Washington is treating two patients with Cepacia but that they are
careful to keep Cepacia patients separated, hustle them in and out
quickly, separate rooms (not sure that's really effective?), etc.
 There's apparently a hospital in Minn. where the docs
change out their outer clothes between patients as well as wash
their hands.  It's claimed that their patients live (on
average) years longer than those at most other clinics.
 Is there a correlation?  If so, in view of the care
given in a particular clinic, would there be value in a listing
based on our observations?   I suspect that the
conscientiousness from clinic to clinic varies.  Thoughts?<br>
<br>
I bring this up only because I just read the listing where a CFer
feels that she may have contracted Cepacia during her 13 day stay
at a hospital.  I realize that this is a sensitive topic and
there may be no way to prove anything...but patients usually are
pretty good about watching hospital protocols.   Then, on
the other hand, sometimes, things can be coincidental.
 However, if I have a choice of going to a clinic where
everyone is REALLY careful...vs one where they just wash their
hands....guess where I'd pick?  Also, to have a Cepacia
patient in a particular hospital bed one day and a non-Cepacia the
next would not seem to be a good practice.<br>
<br>
H2 Paranoid

 

[NoExcuses]

.

 

[EnergyGal]

I think that the housekeeping staff that washes down the hand rails on beds do a half A## job in hospitals. Do you think they really care if they miss a spot? So it really depends on many factors in a hospital than in a doctors office. One day many years from now they might have a way to see germs using a certain light. Wouldn't that be great you can turn on your light and spray that area down really good. I guess I will keep on dreaming until that day comes. I think a good way to prevent Cepacia is to constantly keep your lungs as clean as possible using less IV's throughout the year. The clearer the lungs the less IV's the better the nutrition the patient will stay healthier and Cepacia,Mrsa and Pseudo will never come near you.

I lived with CF for 36 years before my transplant and got Cepacia (at 46) last year on a vent but luckily I had the treatable kind (never asked which one I had) and it never came back. I was very supressed from antirejection meds and induction therapies that is why I got many different infections.

I am sure i touched many things not being able to wash my hands when I had to. I know for a fact that I hardly touch my face but it only takes one time and during my sleep you never know what i did.

 

[Emily65Roses]

Amy, I don't have cepacia, and they sequester me. I'm not allowed to leave my room under my own pretenses at all, period. I do leave... but only for Xrays or whatever other crap they need to have me do that must be done out of room. I'm not allowed to leave of my own volition, though.

 

[thelizardqueen]

I straight up asked my CF nurse if there were cases of Cepacia at my clinic, and the answer is no. That doens't mean that there never will be, but at this point and time, we have no cases of Cepacia. I would ask your clinic - they would have stats on all the hospitals in your state I would imagine. My nurse had listings for all the hospitals in my province, and knew whether there were cases or not.

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Amy, I don't have cepacia, and they sequester me. I'm not allowed to leave my room under my own pretenses at all, period. I do leave... but only for Xrays or whatever other crap they need to have me do that must be done out of room. I'm not allowed to leave of my own volition, though.</end quote></div>

Emily
Just curious....Is this normal protocol for all CF patients in the hospital or do you culture MRSA or something like that and that's why they ask you not to leave the room?
I guess I'm asking is this for your protection or the other person's protection?

 

[Landy]

To answer you question, Harvey....I didn't read all the posts, so maybe it's been mentioned, but if your grandchild is hospitilized, it wouldn't hurt to take your own antibacterial wipes of some kind and wipe down <i>everything</i> in the room from the bed rails to the bathroom to the TV remote control.

 

[Emily65Roses]

I have MRSA. So, yes, technically, I imagine they keep me in my room because of that. Thing is, I haven't cultured it since 01. Ah well. I suppose it is for the other patients' protection, though. It doesn't bother me or make me want to kill, it just gets SOOOOOO boring.

 

[Landy]

I can imagine it would get boring.
It does seem a little overboard since you haven't cultured it since '01 (which is great, by the way).
thanks for the reply<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I am the poster who is on day 13 here at the hospital. There are cepacia patients on the same wing as me. I asked there was one right across the hall from me. So if you think, that is about 8 feet or something, those aren't very good odds. And anyone who isn't a dr or nurse doesn't gown up, glove, or put masks on. They are in and out and touching everything in between.
My dr said that the gowning, etc, is up to CF protocol as far as cepacia goes, but what about everyone else. And I'm sure when I leave not everything I have touched in this room will be wiped down. Sometimes they get very laid back on the house cleaning stuff. So it really bothers me, especially if I didn't have this when I came in and have it when I leave. I have a 7 year old niece with CF and she are very close, live 2 blocks apart, and now what if I have given this to her, or something like that???I will be REALLY upset.
And I'll be really upset if I did get this virus while being in patient. I know that hospitals are the worst place to be. And if THEY are trying to protect me and other CF's on this floor why wouldn't they gown up from day 1. Especially because some of the nurses,etc. don't gown up at all. I've had to tell 3 or 4 at this point that they need to.
For any of you going to clinic or in patient, wipe everything down with alcohol. I don't care if they think I'm a raging lunitic, it is worth it.
Thanks for your conern with this!!!
Kelli
28 years old, CF and waiting on my cepacia culture!!!!!!!

 

[Landy]

Kelli
I can't believe that they put Cepacia patients right across the hall for crying out loud!
Often times they put cepacia patients on a different floor, wing, etc so that the same nurses aren't caring for them & the non-cepacia patients one after another.

It does suck for the cepacia patients to feel alienated, I hate that for their sakes but that may be how they got cepacia in the first place<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[thelizardqueen]

I heard from a Canadian CF webcast, that Cepacia patients in Toronto, Ontario are put on the same floor as non-cepacia patients, but that they have their own nurses, etc (Ender could probably enlighten me). One patient even spoke up at this conference that was webcasted, that she who doesn't have cepacia, went to use a hallway washroom once after asking a nurse if she could use that one. She then went back to the same washroom to use it later on, and was told by another different nurse that only the cepacia patients go use that washroom. So it goes to show that you can't trust nurses and doctors 100% of the time. I would agree with Lynda - wipe EVERYTHING down in your room (bedrails, door knobs, desks, etc) with clorox wipes, or antibacterial wipes of some kind.

 

[anonymous]

Why dont they put cepacia patients in isolation just like they do MRSA patients? We wipe down EVERYTHING before we settle down as well.

 

[NoExcuses]

.

 

[anonymous]

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

I heard from a Canadian CF webcast, that Cepacia patients in Toronto, Ontario are put on the same floor as non-cepacia patients, but that they have their own nurses, etc (Ender could probably enlighten me). One patient even spoke up at this conference that was webcasted, that she who doesn't have cepacia, went to use a hallway washroom once after asking a nurse if she could use that one. She then went back to the same washroom to use it later on, and was told by another different nurse that only the cepacia patients go use that washroom. So it goes to show that you can't trust nurses and doctors 100% of the time. I would agree with Lynda - wipe EVERYTHING down in your room (bedrails, door knobs, desks, etc) with clorox wipes, or antibacterial wipes of some kind.</end quote></div>


Hey there, ok just wanted to pass on some info I was suprised to hear from an RT the last time I had to go in to start my IV's...
I was in there for 3 days to get my IV's started and brought my own Clorox wipes from home. The RT saw them and sorta laughed and said that the wipes I brought would hardly kill anything lurking in a hospital since the hosptial bugs are to strong. He got me a bottle of the wipes they had there that supposedly kill EVERYTHING. Man, they were so strong smelling, I wouldn't doubt it and he said to never use them without gloves. So, I think having alcohol would be good, since nothing can live after being wiped with alcohol or asking for the special hospital disinfectant wipes. I wish I remembered what they called them. Anyways, just wanted to warn you that any old disinfectant wipes, even Clorox wipes may not kill all the nasty stuff. (it's better than nothing, though..I guess)

Chantel (chantelfox)
24/F/CF

 

[lightNlife]

The original question was is there value in having a cepacia
clearinghouse. Perhaps, but in order to do so would likely not be
possible without violating HIPAA regulations.<br>
<br>
As to each hospital's cross-infection control measures, I don't
know each individual healthcare center's requirements, but unless
you have been in contact with sputum, saliva, blood or other body
fluid, the chances of being exposed to cepacia (B or P) are lower
than you'd expect.<br>
<br>
The large majority of in-patient outbreaks of B. cepacia are not
caused by contact with other CF patients, but from infected medical
equipment. Sometimes the vials of albuterol can come from the
manufacturer infected with cepacia. That is much more common than
someone getting it from being across the hall from a CFer whose
nurse didn't gown up.<br>
<br>
I'm not saying this to downplay the seriousness of B. cepacia,
since I have it. I'm conveying this information in order to help
put things in perspective. In my opinion, the bigger bug to watch
out for at the hospital is staph. That can be just about
anywhere--on surfaces, equipment, etc.<br>
<br>
As a sidenote, all of you who use those wipes and stuff, please try
to use hand sanitizer or an alcohol-based disinfectant as opposed
to something that is antibacterial. Using antibacterial soaps,
wipes, sprays, etc. can actually do damage in the long run because
they contribute to antibiotic resistance.

 

[Emily65Roses]

Amy, it's certainly possible. I used to be able to go out with gown/gloves/mask, but they decided somewhere in the last 3 years, that that wasn't even worth it. So now, like I said, unless I need to go to some department for some test or something, I am forced to stay put in my room. Good thing Mike often stays with me, so I don't go out of my mind. Haha. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[my65roses4me]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i> at USC, anyone who has
cepacia, MRSA, or who carries a bacteria that is resistant to more
than one class of antibiotics is in isolation. this means they have
to walk around with a mask/gloves...but they can walk around (which
I have debated wtih my doc about....he says he can't sequester them
but as I'm learning on this thread, it's possible!!!!).
docs/nurses/house cleaners/food delivery people all have to gown up
before they enter the room. mask, gloves and this aprin thing that
covers most of their body. hair net too i think. so that part is
cool. but i can't that isolation patients aren't relegated to their
rooms. nurses have told me of angry cepacia patients who walk
around the ward wiping their hands on everything (without gloves)
out of spite. YIKES!</end quote></div><br>
Hi Amy my name is Khristina. I too go to USC University Hospital. I
am on eof the isolation patients there. I have multiple resistant
Psuedo. From my experience with isolation I can say its not strict
enough. It sounds like it is more strict than other places but not
enough. We do have angry patients that claim that the isolation
stuff is not warranted and wont save anyone from anything. They do
walk around without gloves or masks. So be careful who you talk to
or are around when you are there. The nurses that have been there
for awhile are very good at keeping them isolated but not all.
Isolation patients are suppose to wear mask and gloves when we are
leaving our room for any reason or for any amount of time. The
hospital staff is suppose to wear masks, gloves, and aprons when
they come in my room and dispose of it all when they leave my room
in my trash can not the ones outside of my room. And also they are
suppose to use disposable stethoscopes. But not all do. When I am
awake I always tell them. I try my best but it does get by me
sometimes. If I was you I would not let Dr's and nurses use there
stethoscope. Ask them to you use a disposable one instead. They use
them on all the patients. That is the one thing that transmits bugs
very easily. Just a few pointers. Hope this has helped.<br>
Khristina 31 yr old cfer

 

[anonymous]

Those hosptial wipes are called Sani-Cloth or Germicdial Wipes. It kills PA, Staph, Salmonella, MRSA, Influenza A2 Aisan virus, Aspergillus, Escherichia coli strain, & Herpes Simplex type 2. I ask for a tub everytime Reece gets admitted & bring it home. It says to wear gloves etc when using. So that tells you how strong it is!!!!
Leah

 

[my65roses4me]

<span style=" font-size: x-small;">Another thing also. Most of
these bugs are transmitted by touch or droplets. Meaning if someone
coughs on you or shakes your hand after coughing in it. It is very
important to keep your own hands clean. Use the antiseptic jell
that they have in the hospital not just soap. The jell kills the
germs and does not make them stronger like antibacterial
jells do. Keep the 3 ft rule too. Always stay 3ft away from
anyone that may be contagious especially other cfers. Do not hug
kiss or touch them, and keep your hands clean.