Question on Cepacia

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buggygurl321

New member
I know that normally CFers can't hang with each other b/c they could spread cepacia. BUt say two CFers want to hang out. They have doctor appnts, neither have cepacia, and both are in relatively good health (like, no cold or flu, etc). Would it be safe for them to hang out together, like at a birthday party?


Katie
 
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buggygurl321

New member
I know that normally CFers can't hang with each other b/c they could spread cepacia. BUt say two CFers want to hang out. They have doctor appnts, neither have cepacia, and both are in relatively good health (like, no cold or flu, etc). Would it be safe for them to hang out together, like at a birthday party?


Katie
 
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anonymous

New member
Usually it's not a good idea because there are other bugs to worry about too. Its usually the "3 feet rule" with all cfers
 
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anonymous

New member
Usually it's not a good idea because there are other bugs to worry about too. Its usually the "3 feet rule" with all cfers
 
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Burn

New member
With Cepacia it is defiantly a big no no to hang out with other CFers which for obvious reason is understood. But for those CFers who do not have Cepacia, and do well in there health, it's not uncommon for some CFers to hang out. But I have always been told by my consultant that it?s a better idea if this didn?t happen as there are still other bugs you could catch off each other. So I would say better be safe than sorry and stay away. This is also one of the reasons these boards are created so CFers can talk to each other without risk of infection.
 
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Burn

New member
With Cepacia it is defiantly a big no no to hang out with other CFers which for obvious reason is understood. But for those CFers who do not have Cepacia, and do well in there health, it's not uncommon for some CFers to hang out. But I have always been told by my consultant that it?s a better idea if this didn?t happen as there are still other bugs you could catch off each other. So I would say better be safe than sorry and stay away. This is also one of the reasons these boards are created so CFers can talk to each other without risk of infection.
 
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JennifersHope

New member
.As a nurse to be (10 weeks wahooo) I wouldn't ever take care of or be a nurse for another patient that had CF of any kind, period. Nor would I ever, ever recommend it professionally...

But as a friend of several CFers, I would defintely hang out with them and I have. Two years ago, I flew with another CFer who had a lung transplant.. to Minnesota to the transplant games. We met up with a bunch of ppl that we all knew from the website. It was truly an amazing experience for me.

I stayed for most of the nights in a hotel with another CFer ( like I said she was post transplant) and I wasn't culturing anything at the time but one of the nights I slept at my friend John and Jennys house. John has CF and we all have become such great friends. and I wouldn't trade that experience for anything in the world. I bonded with them so much, that I flew back down there last Christmas. They have become a part of my everyday life now... John now has cepecia so things are a bit trickey and he is real sick now, so I haven't been back..YEt

So that being said, it is up to you what you do, if I knew then what I know now, I would have been more careful but still do it... One of my friends, did have Cepacia at the time, and I knew it, but neither him nor I was as careful as we should have been... As long as you are aware that their is a REAL RISK...you really never know, what ppl are going to culture next.


Jennifer
 
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JennifersHope

New member
.As a nurse to be (10 weeks wahooo) I wouldn't ever take care of or be a nurse for another patient that had CF of any kind, period. Nor would I ever, ever recommend it professionally...

But as a friend of several CFers, I would defintely hang out with them and I have. Two years ago, I flew with another CFer who had a lung transplant.. to Minnesota to the transplant games. We met up with a bunch of ppl that we all knew from the website. It was truly an amazing experience for me.

I stayed for most of the nights in a hotel with another CFer ( like I said she was post transplant) and I wasn't culturing anything at the time but one of the nights I slept at my friend John and Jennys house. John has CF and we all have become such great friends. and I wouldn't trade that experience for anything in the world. I bonded with them so much, that I flew back down there last Christmas. They have become a part of my everyday life now... John now has cepecia so things are a bit trickey and he is real sick now, so I haven't been back..YEt

So that being said, it is up to you what you do, if I knew then what I know now, I would have been more careful but still do it... One of my friends, did have Cepacia at the time, and I knew it, but neither him nor I was as careful as we should have been... As long as you are aware that their is a REAL RISK...you really never know, what ppl are going to culture next.


Jennifer
 
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anonymous

New member
I´m living in Germany and we do have "official" and private meetings of CFers and we do also have medical rehabilitations for CFers. We divide in not pseudomonas/with pseudomonas/with cepacia or mrsa. I know, that some CFers are engaged with each other and don´t have the same germs.
So my personal opinion is that just hanging around, talking, party is no problem if you already have pseudomonas but no cepacia/mrsa.

Uli,43
 
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anonymous

New member
I´m living in Germany and we do have "official" and private meetings of CFers and we do also have medical rehabilitations for CFers. We divide in not pseudomonas/with pseudomonas/with cepacia or mrsa. I know, that some CFers are engaged with each other and don´t have the same germs.
So my personal opinion is that just hanging around, talking, party is no problem if you already have pseudomonas but no cepacia/mrsa.

Uli,43
 
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thelizardqueen

New member
I couldn't agree more with you Amy. All of the CFer's I grew up with passed away from Cepacia. My mum made a point of not letting me hang out with these CFers (with the expection of one summer at camp). I hate to say it, but I'm still here and do not have Cepacia because of this fact. I hate to see what would have happened had I hung out with them on a regular basis.
 
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thelizardqueen

New member
I couldn't agree more with you Amy. All of the CFer's I grew up with passed away from Cepacia. My mum made a point of not letting me hang out with these CFers (with the expection of one summer at camp). I hate to say it, but I'm still here and do not have Cepacia because of this fact. I hate to see what would have happened had I hung out with them on a regular basis.
 
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thelizardqueen

New member
Very creepy Amy!<img src="i/expressions/face-icon-small-smile.gif" border="0"> I definitly think staying away from the CFer's made a big health difference in my life. I didn't have to worry about what bug I may have caught, etc.
 
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thelizardqueen

New member
Very creepy Amy!<img src="i/expressions/face-icon-small-smile.gif" border="0"> I definitly think staying away from the CFer's made a big health difference in my life. I didn't have to worry about what bug I may have caught, etc.
 
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anonymous

New member
I have never been near any other CF ers in my life. I was always paranoid at clinic in every way. I did my cleanouts at home WHENEVER possible.

I still caught cepacia, and I got pseudamonas first when I was 7. Who knows why these things happen!

Caitlin
22 w/ CF, b. cepacia.
 
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anonymous

New member
I have never been near any other CF ers in my life. I was always paranoid at clinic in every way. I did my cleanouts at home WHENEVER possible.

I still caught cepacia, and I got pseudamonas first when I was 7. Who knows why these things happen!

Caitlin
22 w/ CF, b. cepacia.
 
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