Cepacia Protocol

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anonymous

New member
I saw another post that made me wonder what do most CF Clinics do with cepacia patients?
Do they see you on a different day or in a different area, both, or neither?
Also, do any of your centers use separate PFT machines for cepacia patients?
At our center, they see cepacia patients on a different day but I'm guessing we all use
the same lap top PFT machines.
Hope
 
D

Diane

New member
My cf center sees cf patients only on tuesdays, cepacia or not. The one good things is i never sit out in the waiting room long. I dont know if it is this way for everyone or just me because of the cepacia. I also make sure not to sit anywhere near anyone else since i am the one with cepacia and not only do i not want to spread anything to others, i also dont want anything from others spread to me. I normally use the handheld pft machine for my pft's ( except recently) and i believe it is the one used for only cepacia patients. Of coarse we each get a disposable mouth piece and nose clip. I also only go in certain rooms i guess that are designated for cepacia patients. As soon as i get out in my car i use hand sanitizer, which i keep in the car at all times and use whenever i come out of anywhere .
 
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JazzysMom

New member
I cant gaurantee this because things have changed, but in our clinic I believe Cepacia patients are seen on different days or different hours. They dont let anyone sit in the waiting room & if U do its because they didnt know you arrived!
 
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anonymous

New member
my child contracted b cepacia in the hospital from the lack of prtocol then we were always the first patient they never gowned and gloved so i was afraid the could share it with others their must be better protocol and education from the hospital side in our case no one there nurses and doctors really knew we new and our boy derek 10 passed 1-23-04 the hospital is responcible their was a girl right next door with multivorans we shared a nurse that didnt think she had to gown and glove in either room so be careful and alway make sure people are informed and get informed yourself peace to all
 
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anonymous

New member
my child contracted b cepacia in the hospital from the lack of prtocol then we were always the first patient they never gowned and gloved so i was afraid the could share it with others their must be better protocol and education from the hospital side in our case no one there nurses and doctors really knew we new and our boy derek 10 passed 1-23-04 the hospital is responcible their was a girl right next door with multivorans we shared a nurse that didnt think she had to gown and glove in either room so be careful and alway make sure people are informed and get informed yourself peace to all
 
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anonymous

New member
Where I go, Childrens in Boston, they dont see cepacia patients on different days. All CF patients are seen on tues. and wednesday. We do however go straight into a room that has been cleaned and everyone wears gowns and gloves and cepacia patients use lap top machines whereas regular ones use the big old ones. Everything is, supposedley, cleaned in between. I already have cepacia- so these protocols are nice, but I only wish they had come a little sooner, instead of when i was little and everyone sat in the same room, did PFT's in front of everyone (!) and they didn't even change the tubing unless you asked.

caitlin
22 w/ CF, b. cepacia
 
A

anonymous

New member
Where I go, Childrens in Boston, they dont see cepacia patients on different days. All CF patients are seen on tues. and wednesday. We do however go straight into a room that has been cleaned and everyone wears gowns and gloves and cepacia patients use lap top machines whereas regular ones use the big old ones. Everything is, supposedley, cleaned in between. I already have cepacia- so these protocols are nice, but I only wish they had come a little sooner, instead of when i was little and everyone sat in the same room, did PFT's in front of everyone (!) and they didn't even change the tubing unless you asked.

caitlin
22 w/ CF, b. cepacia
 
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Jane

Digital opinion leader
Hi Caitlin,

We go to Children's Boston too. I do think cf people are seen on different days. My kids are seen on Monday but we were seen last time on Thursday. It depends on the doctor and the bacteria. My kids do not have cepacia, but we also get a room right away. We also have the pft cart on wheels. I think everyone does now. In clinic everything is cleaned between patients, even the benches in the hall. The only place that seems to be lacking is in X-ray. And the ER is totally gross!
If you don't mind me asking, who is your doc?
 
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Jane

Digital opinion leader
Hi Caitlin,

We go to Children's Boston too. I do think cf people are seen on different days. My kids are seen on Monday but we were seen last time on Thursday. It depends on the doctor and the bacteria. My kids do not have cepacia, but we also get a room right away. We also have the pft cart on wheels. I think everyone does now. In clinic everything is cleaned between patients, even the benches in the hall. The only place that seems to be lacking is in X-ray. And the ER is totally gross!
If you don't mind me asking, who is your doc?
 
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Diane

New member
To Derek's father~ I am also sorry to hear of your son's passing. I'll keep you and your family in my prayers............
 
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Diane

New member
To Derek's father~ I am also sorry to hear of your son's passing. I'll keep you and your family in my prayers............
 
A

anonymous

New member
Jane-
I see Dr. Donovan

I know my days aren't specifically cepacia, because i know there are kids there during those times without it. I happen to go on those days b/c those are the only days my Doctor is in the hospital. Yeah, x-ray is gross, and the ER to me is so frightening I would never even go. I would not be surprised if everyone was using the laptops, but recently i was there and saw someone doing pft's on the regular machine...so i dont think they have completely discontinued them.

Caitlin
 
A

anonymous

New member
Jane-
I see Dr. Donovan

I know my days aren't specifically cepacia, because i know there are kids there during those times without it. I happen to go on those days b/c those are the only days my Doctor is in the hospital. Yeah, x-ray is gross, and the ER to me is so frightening I would never even go. I would not be surprised if everyone was using the laptops, but recently i was there and saw someone doing pft's on the regular machine...so i dont think they have completely discontinued them.

Caitlin
 
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Jane

Digital opinion leader
To Derek's Dad,
I am so sorry for your loss. My youngest son is ten too. My heart is with you and your family.

jane
 
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