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Question on Cepacia
- Thread starter buggygurl321
- Start date
It is scary and frustrating that I still somehow caught cepacia. My guess is that sometime during a clinic visit or something, or anywhere in the hospital, I came in contact with it. Again I was always careful but I wasn't wearing a bubble suit or anything, so you never know how it happens. Plus, only about 5 years ago clinics weren't nearly as careful about cross-contamination.
My understanding is that even though cepacia is found in certain environmental/natural things (onions for example) they are not sure if this "version" of cepacia is enough to colonize a CF lungs, or if it needs to be an actual patient-patient thing.
My records got messed up back when I caught it and there was a lot of confusion, so unlike a lot of other people, I do not know the EXACT date of my first cepacia culture. It was sometime around the time I was 16...17? At the time I was very healthy and hardly ever in the hospital, but the clinics werent nearly as careful, even though I was.
I still hold to the fact that those old PFT machines, i.e. the ones that the tube is attached too, could harbor germs. They always INSISTED it didnt- but- now we all use laptop machines and dont breath through anything the same.....
Sometimes when I think about the fact that I did get cepacia, after all my mother's and my efforts, it makes me so angry. But I cant think about it.
Caitlin
22 w/ CF, b. cepacia
My understanding is that even though cepacia is found in certain environmental/natural things (onions for example) they are not sure if this "version" of cepacia is enough to colonize a CF lungs, or if it needs to be an actual patient-patient thing.
My records got messed up back when I caught it and there was a lot of confusion, so unlike a lot of other people, I do not know the EXACT date of my first cepacia culture. It was sometime around the time I was 16...17? At the time I was very healthy and hardly ever in the hospital, but the clinics werent nearly as careful, even though I was.
I still hold to the fact that those old PFT machines, i.e. the ones that the tube is attached too, could harbor germs. They always INSISTED it didnt- but- now we all use laptop machines and dont breath through anything the same.....
Sometimes when I think about the fact that I did get cepacia, after all my mother's and my efforts, it makes me so angry. But I cant think about it.
Caitlin
22 w/ CF, b. cepacia
It is scary and frustrating that I still somehow caught cepacia. My guess is that sometime during a clinic visit or something, or anywhere in the hospital, I came in contact with it. Again I was always careful but I wasn't wearing a bubble suit or anything, so you never know how it happens. Plus, only about 5 years ago clinics weren't nearly as careful about cross-contamination.
My understanding is that even though cepacia is found in certain environmental/natural things (onions for example) they are not sure if this "version" of cepacia is enough to colonize a CF lungs, or if it needs to be an actual patient-patient thing.
My records got messed up back when I caught it and there was a lot of confusion, so unlike a lot of other people, I do not know the EXACT date of my first cepacia culture. It was sometime around the time I was 16...17? At the time I was very healthy and hardly ever in the hospital, but the clinics werent nearly as careful, even though I was.
I still hold to the fact that those old PFT machines, i.e. the ones that the tube is attached too, could harbor germs. They always INSISTED it didnt- but- now we all use laptop machines and dont breath through anything the same.....
Sometimes when I think about the fact that I did get cepacia, after all my mother's and my efforts, it makes me so angry. But I cant think about it.
Caitlin
22 w/ CF, b. cepacia
My understanding is that even though cepacia is found in certain environmental/natural things (onions for example) they are not sure if this "version" of cepacia is enough to colonize a CF lungs, or if it needs to be an actual patient-patient thing.
My records got messed up back when I caught it and there was a lot of confusion, so unlike a lot of other people, I do not know the EXACT date of my first cepacia culture. It was sometime around the time I was 16...17? At the time I was very healthy and hardly ever in the hospital, but the clinics werent nearly as careful, even though I was.
I still hold to the fact that those old PFT machines, i.e. the ones that the tube is attached too, could harbor germs. They always INSISTED it didnt- but- now we all use laptop machines and dont breath through anything the same.....
Sometimes when I think about the fact that I did get cepacia, after all my mother's and my efforts, it makes me so angry. But I cant think about it.
Caitlin
22 w/ CF, b. cepacia
Caitlin,
I'm with you on this one. It is so frustrating to think that with all the careful steps we take as parents and patients you still get the bad bugs. No its not fair, nothing is. SH*T HAPPENS. You are so right not to dwell on it. I know its a Hallmark card expression but, A positive attitude does wonders for your health.
But it helps to vent, you're entitled!
I'm with you on this one. It is so frustrating to think that with all the careful steps we take as parents and patients you still get the bad bugs. No its not fair, nothing is. SH*T HAPPENS. You are so right not to dwell on it. I know its a Hallmark card expression but, A positive attitude does wonders for your health.
But it helps to vent, you're entitled!
Caitlin,
I'm with you on this one. It is so frustrating to think that with all the careful steps we take as parents and patients you still get the bad bugs. No its not fair, nothing is. SH*T HAPPENS. You are so right not to dwell on it. I know its a Hallmark card expression but, A positive attitude does wonders for your health.
But it helps to vent, you're entitled!
I'm with you on this one. It is so frustrating to think that with all the careful steps we take as parents and patients you still get the bad bugs. No its not fair, nothing is. SH*T HAPPENS. You are so right not to dwell on it. I know its a Hallmark card expression but, A positive attitude does wonders for your health.
But it helps to vent, you're entitled!
Hospitals and clinics are germy places. Someone mentioned doctors ties. How 'bout stethoscopes? How about the pen that the doctor carries from room to room to room to take notes. At our hospital the rts wash their hands, but they don't gown up or wear masks. When DS was in the NICU the RTs went from bed to bed to bed and with teeny tiny babies, a lot of CPT and treatment is done holding the infant up to their bodies. So the RT is maybe suctioning someone out, giving someone oxygen, patient coughs, sneezes, spits up -- splatters something on their scrub shirt and then goes on to the next patient... And don't get me started about the community albuterol bottle most of them carry in their pockets along with saline.
Community waiting rooms -- how often do you think anyone cleans off the arms on the chairs. Our CF clinic is usually pretty crowded. CFers and their families sitting elbow to elbow. Someone gets called into Xray, Pulmo, etc. and leaves their chair and someone else takes their place.
There are germs everywhere and you have to be vigilant. I've had remind one doctor to wash his hands.
Community waiting rooms -- how often do you think anyone cleans off the arms on the chairs. Our CF clinic is usually pretty crowded. CFers and their families sitting elbow to elbow. Someone gets called into Xray, Pulmo, etc. and leaves their chair and someone else takes their place.
There are germs everywhere and you have to be vigilant. I've had remind one doctor to wash his hands.
Hospitals and clinics are germy places. Someone mentioned doctors ties. How 'bout stethoscopes? How about the pen that the doctor carries from room to room to room to take notes. At our hospital the rts wash their hands, but they don't gown up or wear masks. When DS was in the NICU the RTs went from bed to bed to bed and with teeny tiny babies, a lot of CPT and treatment is done holding the infant up to their bodies. So the RT is maybe suctioning someone out, giving someone oxygen, patient coughs, sneezes, spits up -- splatters something on their scrub shirt and then goes on to the next patient... And don't get me started about the community albuterol bottle most of them carry in their pockets along with saline.
Community waiting rooms -- how often do you think anyone cleans off the arms on the chairs. Our CF clinic is usually pretty crowded. CFers and their families sitting elbow to elbow. Someone gets called into Xray, Pulmo, etc. and leaves their chair and someone else takes their place.
There are germs everywhere and you have to be vigilant. I've had remind one doctor to wash his hands.
Community waiting rooms -- how often do you think anyone cleans off the arms on the chairs. Our CF clinic is usually pretty crowded. CFers and their families sitting elbow to elbow. Someone gets called into Xray, Pulmo, etc. and leaves their chair and someone else takes their place.
There are germs everywhere and you have to be vigilant. I've had remind one doctor to wash his hands.
Liza it is scarey that it is used in agricultural means, usually to control rotting of certain plants. I remember reading one article how the CF community protested such use because of our susceptibility to this bug. BTW, anyone here grow out B. stabilis (or genomovar IV)? That's what grew out of my last culture along with steno maltophillia 4+ growth. I know it isn't as common as the genomovars II and III in the CF population. When I first discovered that I had cepacia, I did research on it and was amazed to see that there are 9 different genomovars!!! Makes for interesting reading that's for sure...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Liza it is scarey that it is used in agricultural means, usually to control rotting of certain plants. I remember reading one article how the CF community protested such use because of our susceptibility to this bug. BTW, anyone here grow out B. stabilis (or genomovar IV)? That's what grew out of my last culture along with steno maltophillia 4+ growth. I know it isn't as common as the genomovars II and III in the CF population. When I first discovered that I had cepacia, I did research on it and was amazed to see that there are 9 different genomovars!!! Makes for interesting reading that's for sure...
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ry had a particularly nasty version of genomovar III. Yes, they do use it in agriculture, which I think is insane, because those of us who live in rural areas have a much better chance of getting it that way.
Emily, it's a good thing I don't have CF, so that our face licking isn't interrupted!
Emily, it's a good thing I don't have CF, so that our face licking isn't interrupted!
Ry had a particularly nasty version of genomovar III. Yes, they do use it in agriculture, which I think is insane, because those of us who live in rural areas have a much better chance of getting it that way.
Emily, it's a good thing I don't have CF, so that our face licking isn't interrupted!
Emily, it's a good thing I don't have CF, so that our face licking isn't interrupted!
It's kinda strange, but I never think about the fact that I have cepaica.
I probably should think about it more. I mean I'm very careful to avoid contact with any CFers, and follow protocol. But, I don't think I realized that it impacts your CF. I caught it when I was probably 12 or 13.
I know it makes me resistant to meds, and more suceptable.
I guess I just never think about it as having such a negative impact on my health.
Christian
I probably should think about it more. I mean I'm very careful to avoid contact with any CFers, and follow protocol. But, I don't think I realized that it impacts your CF. I caught it when I was probably 12 or 13.
I know it makes me resistant to meds, and more suceptable.
I guess I just never think about it as having such a negative impact on my health.
Christian
It's kinda strange, but I never think about the fact that I have cepaica.
I probably should think about it more. I mean I'm very careful to avoid contact with any CFers, and follow protocol. But, I don't think I realized that it impacts your CF. I caught it when I was probably 12 or 13.
I know it makes me resistant to meds, and more suceptable.
I guess I just never think about it as having such a negative impact on my health.
Christian
I probably should think about it more. I mean I'm very careful to avoid contact with any CFers, and follow protocol. But, I don't think I realized that it impacts your CF. I caught it when I was probably 12 or 13.
I know it makes me resistant to meds, and more suceptable.
I guess I just never think about it as having such a negative impact on my health.
Christian
princessjdc
New member
my doc told me to stay 6feet away from someone with cf, not 3 feet. Here is something about me thou, and probably the same with everyone else, like if Im talking to someone in person with cf, I try and keep a good distance away, cause Im so worried about getting their germs. I went to a cf party that the cf pharmacy puts on, it was for christmas, and I dont think Ill ever go again, cause I felt like I could of easily gotten someone's germs or gave mine to someone too, but the nurse had everyone with cf stand next to each other for a group picture, talk about unconfertable and germy. Ever since my pick lines I have had in the past which was two of them, I had become a germ freak like lizardqueen. Im not only like that with others that have cf, but with anyone that has a cold or something of some sort. It is so sad that we have to be so careful at some of the things that we do cause of so many bad germs. : (
princessjdc
New member
my doc told me to stay 6feet away from someone with cf, not 3 feet. Here is something about me thou, and probably the same with everyone else, like if Im talking to someone in person with cf, I try and keep a good distance away, cause Im so worried about getting their germs. I went to a cf party that the cf pharmacy puts on, it was for christmas, and I dont think Ill ever go again, cause I felt like I could of easily gotten someone's germs or gave mine to someone too, but the nurse had everyone with cf stand next to each other for a group picture, talk about unconfertable and germy. Ever since my pick lines I have had in the past which was two of them, I had become a germ freak like lizardqueen. Im not only like that with others that have cf, but with anyone that has a cold or something of some sort. It is so sad that we have to be so careful at some of the things that we do cause of so many bad germs. : (