B. cepacia questions cont.

M

momtoCory

New member
Cory has B. Cepacia. We are uncertain where he received it. Cepacia changed our world.
We stay away from CFF sponsored events. I would like to think that everyone with Cepacia does. But I do not think everyone does. I do know there is a young adult that cultured Cepacia but because her 2nd culture didn't should it, they blew it off and still attend events. So I am not sure that you can be certain.
 
M

momtoCory

New member
Cory has B. Cepacia. We are uncertain where he received it. Cepacia changed our world.
We stay away from CFF sponsored events. I would like to think that everyone with Cepacia does. But I do not think everyone does. I do know there is a young adult that cultured Cepacia but because her 2nd culture didn't should it, they blew it off and still attend events. So I am not sure that you can be certain.
 
M

momtoCory

New member
Cory has B. Cepacia. We are uncertain where he received it. Cepacia changed our world.
We stay away from CFF sponsored events. I would like to think that everyone with Cepacia does. But I do not think everyone does. I do know there is a young adult that cultured Cepacia but because her 2nd culture didn't should it, they blew it off and still attend events. So I am not sure that you can be certain.
 
M

momtoCory

New member
Cory has B. Cepacia. We are uncertain where he received it. Cepacia changed our world.
We stay away from CFF sponsored events. I would like to think that everyone with Cepacia does. But I do not think everyone does. I do know there is a young adult that cultured Cepacia but because her 2nd culture didn't should it, they blew it off and still attend events. So I am not sure that you can be certain.
 
M

momtoCory

New member
Cory has B. Cepacia. We are uncertain where he received it. Cepacia changed our world.
<br />We stay away from CFF sponsored events. I would like to think that everyone with Cepacia does. But I do not think everyone does. I do know there is a young adult that cultured Cepacia but because her 2nd culture didn't should it, they blew it off and still attend events. So I am not sure that you can be certain.
 
D

Diane

New member
I have b.cepacia for about 11 years now. I am not sure of the percentage of cf patients who have it but from what i recall it is pretty low ( maybe like 3% or so) I got mine right after i had sinus surgery. Now there are several things that could have caused it, the surgery itself ( when they vent you for the surgery ,if it isnt properly sterlized you can get it from there) or it could have been the mouthwash ( the mouthwash they gave me at the hospital was later found to contain b.cepacia) Or it could have been sloppy housekeeping that they do in the hospital. The rooms were filthy and not properly sterlized, It could have been on any object i touched ( handrail, shower, etc.). So i know it was from one of those 3 options but i dont know which is the exact culprit. I do not attend cf functions, not only to avoid others from catching cepacia from me, but to also protect myself from getting something else i dont have from someone else with cf. I do however attend a local cf car show every year, and there is one other cf patient that i see each year there. He does not have b.cepacia and i warned him via email that i do ,so when we see each other we keep a good 4 feet distance between us when we talk.
 
D

Diane

New member
I have b.cepacia for about 11 years now. I am not sure of the percentage of cf patients who have it but from what i recall it is pretty low ( maybe like 3% or so) I got mine right after i had sinus surgery. Now there are several things that could have caused it, the surgery itself ( when they vent you for the surgery ,if it isnt properly sterlized you can get it from there) or it could have been the mouthwash ( the mouthwash they gave me at the hospital was later found to contain b.cepacia) Or it could have been sloppy housekeeping that they do in the hospital. The rooms were filthy and not properly sterlized, It could have been on any object i touched ( handrail, shower, etc.). So i know it was from one of those 3 options but i dont know which is the exact culprit. I do not attend cf functions, not only to avoid others from catching cepacia from me, but to also protect myself from getting something else i dont have from someone else with cf. I do however attend a local cf car show every year, and there is one other cf patient that i see each year there. He does not have b.cepacia and i warned him via email that i do ,so when we see each other we keep a good 4 feet distance between us when we talk.
 
D

Diane

New member
I have b.cepacia for about 11 years now. I am not sure of the percentage of cf patients who have it but from what i recall it is pretty low ( maybe like 3% or so) I got mine right after i had sinus surgery. Now there are several things that could have caused it, the surgery itself ( when they vent you for the surgery ,if it isnt properly sterlized you can get it from there) or it could have been the mouthwash ( the mouthwash they gave me at the hospital was later found to contain b.cepacia) Or it could have been sloppy housekeeping that they do in the hospital. The rooms were filthy and not properly sterlized, It could have been on any object i touched ( handrail, shower, etc.). So i know it was from one of those 3 options but i dont know which is the exact culprit. I do not attend cf functions, not only to avoid others from catching cepacia from me, but to also protect myself from getting something else i dont have from someone else with cf. I do however attend a local cf car show every year, and there is one other cf patient that i see each year there. He does not have b.cepacia and i warned him via email that i do ,so when we see each other we keep a good 4 feet distance between us when we talk.
 
D

Diane

New member
I have b.cepacia for about 11 years now. I am not sure of the percentage of cf patients who have it but from what i recall it is pretty low ( maybe like 3% or so) I got mine right after i had sinus surgery. Now there are several things that could have caused it, the surgery itself ( when they vent you for the surgery ,if it isnt properly sterlized you can get it from there) or it could have been the mouthwash ( the mouthwash they gave me at the hospital was later found to contain b.cepacia) Or it could have been sloppy housekeeping that they do in the hospital. The rooms were filthy and not properly sterlized, It could have been on any object i touched ( handrail, shower, etc.). So i know it was from one of those 3 options but i dont know which is the exact culprit. I do not attend cf functions, not only to avoid others from catching cepacia from me, but to also protect myself from getting something else i dont have from someone else with cf. I do however attend a local cf car show every year, and there is one other cf patient that i see each year there. He does not have b.cepacia and i warned him via email that i do ,so when we see each other we keep a good 4 feet distance between us when we talk.
 
D

Diane

New member
I have b.cepacia for about 11 years now. I am not sure of the percentage of cf patients who have it but from what i recall it is pretty low ( maybe like 3% or so) I got mine right after i had sinus surgery. Now there are several things that could have caused it, the surgery itself ( when they vent you for the surgery ,if it isnt properly sterlized you can get it from there) or it could have been the mouthwash ( the mouthwash they gave me at the hospital was later found to contain b.cepacia) Or it could have been sloppy housekeeping that they do in the hospital. The rooms were filthy and not properly sterlized, It could have been on any object i touched ( handrail, shower, etc.). So i know it was from one of those 3 options but i dont know which is the exact culprit. I do not attend cf functions, not only to avoid others from catching cepacia from me, but to also protect myself from getting something else i dont have from someone else with cf. I do however attend a local cf car show every year, and there is one other cf patient that i see each year there. He does not have b.cepacia and i warned him via email that i do ,so when we see each other we keep a good 4 feet distance between us when we talk.
 
J

jamiebug

New member
I was diagnosed with B.Cepacia at the age of around 14 and I am now 29. I don't know how many for sure have it, but I think it is almost innevitable that patients will culture it. It is found in the enviroment so frequently. Onions for one can culture it if they are going or gone bad I think....it was used in pestisides as part of the ingredience. It is a bacteria like anything else- you can pick it up unknowingly in many places. It is important to carry hand sanitizer and use it OFTEN. Most infection come from your hands touching your face.

8 months ago I had a double lung transplant- so despite what most people say there are hospitals that are willing to them here in the US....I originally was told I would probably have to go to Toronto.

Try to be understanding and sensitive to those of us who have Cepacia- because it is true how the CF community makes us feel wrote off and unwanted. We still have CF and we are still people.
 
J

jamiebug

New member
I was diagnosed with B.Cepacia at the age of around 14 and I am now 29. I don't know how many for sure have it, but I think it is almost innevitable that patients will culture it. It is found in the enviroment so frequently. Onions for one can culture it if they are going or gone bad I think....it was used in pestisides as part of the ingredience. It is a bacteria like anything else- you can pick it up unknowingly in many places. It is important to carry hand sanitizer and use it OFTEN. Most infection come from your hands touching your face.

8 months ago I had a double lung transplant- so despite what most people say there are hospitals that are willing to them here in the US....I originally was told I would probably have to go to Toronto.

Try to be understanding and sensitive to those of us who have Cepacia- because it is true how the CF community makes us feel wrote off and unwanted. We still have CF and we are still people.
 
J

jamiebug

New member
I was diagnosed with B.Cepacia at the age of around 14 and I am now 29. I don't know how many for sure have it, but I think it is almost innevitable that patients will culture it. It is found in the enviroment so frequently. Onions for one can culture it if they are going or gone bad I think....it was used in pestisides as part of the ingredience. It is a bacteria like anything else- you can pick it up unknowingly in many places. It is important to carry hand sanitizer and use it OFTEN. Most infection come from your hands touching your face.

8 months ago I had a double lung transplant- so despite what most people say there are hospitals that are willing to them here in the US....I originally was told I would probably have to go to Toronto.

Try to be understanding and sensitive to those of us who have Cepacia- because it is true how the CF community makes us feel wrote off and unwanted. We still have CF and we are still people.
 
J

jamiebug

New member
I was diagnosed with B.Cepacia at the age of around 14 and I am now 29. I don't know how many for sure have it, but I think it is almost innevitable that patients will culture it. It is found in the enviroment so frequently. Onions for one can culture it if they are going or gone bad I think....it was used in pestisides as part of the ingredience. It is a bacteria like anything else- you can pick it up unknowingly in many places. It is important to carry hand sanitizer and use it OFTEN. Most infection come from your hands touching your face.

8 months ago I had a double lung transplant- so despite what most people say there are hospitals that are willing to them here in the US....I originally was told I would probably have to go to Toronto.

Try to be understanding and sensitive to those of us who have Cepacia- because it is true how the CF community makes us feel wrote off and unwanted. We still have CF and we are still people.
 
J

jamiebug

New member
I was diagnosed with B.Cepacia at the age of around 14 and I am now 29. I don't know how many for sure have it, but I think it is almost innevitable that patients will culture it. It is found in the enviroment so frequently. Onions for one can culture it if they are going or gone bad I think....it was used in pestisides as part of the ingredience. It is a bacteria like anything else- you can pick it up unknowingly in many places. It is important to carry hand sanitizer and use it OFTEN. Most infection come from your hands touching your face.
<br />
<br />8 months ago I had a double lung transplant- so despite what most people say there are hospitals that are willing to them here in the US....I originally was told I would probably have to go to Toronto.
<br />
<br />Try to be understanding and sensitive to those of us who have Cepacia- because it is true how the CF community makes us feel wrote off and unwanted. We still have CF and we are still people.
 
M

moxie1

Guest
I have cepacia and I'm pretty sure I got it from my cousin who also had cf. I didn't know he had cepacia, and we weren't told he cultured a bad bug although I don't know if it would have made a difference if we had....none of us knew anything about it.

I agree with others that it stinks being the "leper" of the cf community. I hate that many clinical trials exclude cepacia patients, because I would love to participate. I also hate that everyone has to gown up when coming in my room in the hospital like I have the plague or something.

I shouldn't complain though......God has blessed me very much!
 
M

moxie1

Guest
I have cepacia and I'm pretty sure I got it from my cousin who also had cf. I didn't know he had cepacia, and we weren't told he cultured a bad bug although I don't know if it would have made a difference if we had....none of us knew anything about it.

I agree with others that it stinks being the "leper" of the cf community. I hate that many clinical trials exclude cepacia patients, because I would love to participate. I also hate that everyone has to gown up when coming in my room in the hospital like I have the plague or something.

I shouldn't complain though......God has blessed me very much!
 
M

moxie1

Guest
I have cepacia and I'm pretty sure I got it from my cousin who also had cf. I didn't know he had cepacia, and we weren't told he cultured a bad bug although I don't know if it would have made a difference if we had....none of us knew anything about it.

I agree with others that it stinks being the "leper" of the cf community. I hate that many clinical trials exclude cepacia patients, because I would love to participate. I also hate that everyone has to gown up when coming in my room in the hospital like I have the plague or something.

I shouldn't complain though......God has blessed me very much!
 
M

moxie1

Guest
I have cepacia and I'm pretty sure I got it from my cousin who also had cf. I didn't know he had cepacia, and we weren't told he cultured a bad bug although I don't know if it would have made a difference if we had....none of us knew anything about it.

I agree with others that it stinks being the "leper" of the cf community. I hate that many clinical trials exclude cepacia patients, because I would love to participate. I also hate that everyone has to gown up when coming in my room in the hospital like I have the plague or something.

I shouldn't complain though......God has blessed me very much!
 
M

moxie1

Guest
I have cepacia and I'm pretty sure I got it from my cousin who also had cf. I didn't know he had cepacia, and we weren't told he cultured a bad bug although I don't know if it would have made a difference if we had....none of us knew anything about it.
<br />
<br />I agree with others that it stinks being the "leper" of the cf community. I hate that many clinical trials exclude cepacia patients, because I would love to participate. I also hate that everyone has to gown up when coming in my room in the hospital like I have the plague or something.
<br />
<br />I shouldn't complain though......God has blessed me very much!
 
You must log in or register to reply here.
Top