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Question on Cepacia
- Thread starter buggygurl321
- Start date
I have a 9 year old son with CF - until I started reading this a couple weeks ago ( I don't know why I haven't before this - you do learn alot) anyway how come the doctors or nurses don't tell you about cepacia and to stay away from others. I didn't even know about cepecia til I started reading this and I had to ask someone. I will be asking about it when we go again and ask how they handle the infection control. Could you tell me how it spreads? Can you inhale it or is it mainly from hands to mouth or something? I'm almost paranoid to go to the clinic again. Believe me I would like to protect my son from that in every way!! It sounds like you never get rid of it either?
Mother of Tanner 9 w cf
Mother of Tanner 9 w cf
I have a 9 year old son with CF - until I started reading this a couple weeks ago ( I don't know why I haven't before this - you do learn alot) anyway how come the doctors or nurses don't tell you about cepacia and to stay away from others. I didn't even know about cepecia til I started reading this and I had to ask someone. I will be asking about it when we go again and ask how they handle the infection control. Could you tell me how it spreads? Can you inhale it or is it mainly from hands to mouth or something? I'm almost paranoid to go to the clinic again. Believe me I would like to protect my son from that in every way!! It sounds like you never get rid of it either?
Mother of Tanner 9 w cf
Mother of Tanner 9 w cf
thelizardqueen
New member
It worries me that Caitlin said she never was around CFer's, she was paranoid at clinic, and did her cleanouts at home and still caught Cepacia. How else do you catch it? My understanding is that you catch it by either using something that someone with Cepacia used before you, someone with Cepacia coughing, or in hospital. I'm very careful when it comes to using hand sanitizer whenver I'm in clinic, I haven't been in hospital for IV's in about 10 years, and if it did come to that, I'd do them at home, and I'm never around CFer's. How else can Cepacia be caught?
thelizardqueen
New member
It worries me that Caitlin said she never was around CFer's, she was paranoid at clinic, and did her cleanouts at home and still caught Cepacia. How else do you catch it? My understanding is that you catch it by either using something that someone with Cepacia used before you, someone with Cepacia coughing, or in hospital. I'm very careful when it comes to using hand sanitizer whenver I'm in clinic, I haven't been in hospital for IV's in about 10 years, and if it did come to that, I'd do them at home, and I'm never around CFer's. How else can Cepacia be caught?
lilMeggies
New member
actually I questioned my doctors about this today and it is perfectly safe the hang out with another cfer as long as they don't have cepecia and your washing your hands, not sharing food and drink, and not making too much contact (ie making out or something like that)....I would never give up hanging out with Chad just because we both have CF....and my lungs are extremly healthy <img src="i/expressions/face-icon-small-happy.gif" border="0">
lilMeggies
New member
actually I questioned my doctors about this today and it is perfectly safe the hang out with another cfer as long as they don't have cepecia and your washing your hands, not sharing food and drink, and not making too much contact (ie making out or something like that)....I would never give up hanging out with Chad just because we both have CF....and my lungs are extremly healthy <img src="i/expressions/face-icon-small-happy.gif" border="0">
It's not a good idea to hang out around CFers - even in clinic. Here's why:
Studies done at CF care clinics of the strains of pseudamonus and cepacia that patients are colonized with show a very strong link.
There are thousands of different strains of these two bacterium due to mutation (just like there are different strains of the flu virus every year due to mutation).
It's not 100%, but most patients in most clinics have the same strains of bacteria. If a patient moves to another clinic, a few years down the line, that patient will culture that local strain.
Now as mentioned before, cepacia and pseudamonus can be found in many different places - not just CF lungs. as others have mentioned - tap water, some mouthwashes, and many other areas.
But if you speak to infectious disease specialists, especially those in Bethesda that specialize in CF, they will tell you that the latest thinking is there is a lot of cross-contamination that occurs between CF patients because these bacteria are so virulent and can last so long outside the body.
Studies done at CF care clinics of the strains of pseudamonus and cepacia that patients are colonized with show a very strong link.
There are thousands of different strains of these two bacterium due to mutation (just like there are different strains of the flu virus every year due to mutation).
It's not 100%, but most patients in most clinics have the same strains of bacteria. If a patient moves to another clinic, a few years down the line, that patient will culture that local strain.
Now as mentioned before, cepacia and pseudamonus can be found in many different places - not just CF lungs. as others have mentioned - tap water, some mouthwashes, and many other areas.
But if you speak to infectious disease specialists, especially those in Bethesda that specialize in CF, they will tell you that the latest thinking is there is a lot of cross-contamination that occurs between CF patients because these bacteria are so virulent and can last so long outside the body.
It's not a good idea to hang out around CFers - even in clinic. Here's why:
Studies done at CF care clinics of the strains of pseudamonus and cepacia that patients are colonized with show a very strong link.
There are thousands of different strains of these two bacterium due to mutation (just like there are different strains of the flu virus every year due to mutation).
It's not 100%, but most patients in most clinics have the same strains of bacteria. If a patient moves to another clinic, a few years down the line, that patient will culture that local strain.
Now as mentioned before, cepacia and pseudamonus can be found in many different places - not just CF lungs. as others have mentioned - tap water, some mouthwashes, and many other areas.
But if you speak to infectious disease specialists, especially those in Bethesda that specialize in CF, they will tell you that the latest thinking is there is a lot of cross-contamination that occurs between CF patients because these bacteria are so virulent and can last so long outside the body.
Studies done at CF care clinics of the strains of pseudamonus and cepacia that patients are colonized with show a very strong link.
There are thousands of different strains of these two bacterium due to mutation (just like there are different strains of the flu virus every year due to mutation).
It's not 100%, but most patients in most clinics have the same strains of bacteria. If a patient moves to another clinic, a few years down the line, that patient will culture that local strain.
Now as mentioned before, cepacia and pseudamonus can be found in many different places - not just CF lungs. as others have mentioned - tap water, some mouthwashes, and many other areas.
But if you speak to infectious disease specialists, especially those in Bethesda that specialize in CF, they will tell you that the latest thinking is there is a lot of cross-contamination that occurs between CF patients because these bacteria are so virulent and can last so long outside the body.
lilMeggies
New member
pretty sure my doctor knows more then you do!
lilMeggies
New member
pretty sure my doctor knows more then you do!
Emily65Roses
New member
Ahhh Meghan, you'll never win that argument. People have VERY big things against CFers hanging out together. It certainly does have dangers, even if there's no known cepacia threat (sometimes it can be there whether you know about it or not). Pseudomonas and MRSA and other things have dangers of their own as well.
I am with you, though. I have CF friends and I wouldn't give them up. We're just careful not to rub ourselves all over each other or lick one another's faces. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I am with you, though. I have CF friends and I wouldn't give them up. We're just careful not to rub ourselves all over each other or lick one another's faces. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Emily65Roses
New member
Ahhh Meghan, you'll never win that argument. People have VERY big things against CFers hanging out together. It certainly does have dangers, even if there's no known cepacia threat (sometimes it can be there whether you know about it or not). Pseudomonas and MRSA and other things have dangers of their own as well.
I am with you, though. I have CF friends and I wouldn't give them up. We're just careful not to rub ourselves all over each other or lick one another's faces. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I am with you, though. I have CF friends and I wouldn't give them up. We're just careful not to rub ourselves all over each other or lick one another's faces. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
lilMeggies
New member
lol awe you mean when chad and I made out and grabbed eachother all over that wasn't safe lol
damn!
jokes jokes
damn!
jokes jokes
lilMeggies
New member
lol awe you mean when chad and I made out and grabbed eachother all over that wasn't safe lol
damn!
jokes jokes
damn!
jokes jokes