B. cepacia questions cont.

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MissAlexsBP

Guest
Hello!

I just recently cultured cepacia, and honestly, I'm not quite sure how I got it, because I really don't know anyone else with CF (other than online), but I do live in a very rural area, so I probably got it from just being outside. But, it is possible I got it while I was in the hospital for a clean-out. Who knows.
Luckily, my last culture didn't show cepacia, but they said that it probably doesn't mean I don't have it anymore, just that perhaps the sputum that they got didn't have the cepacia, if that makes any sense.
Since I found out I had the cepacia I'm not going to anymore CFF events. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I used to love the walk, but I guess it's better that I don't go.
I know you said you were nervous about brining your daughter, and I don't know if it would help, but before when I went, people would wear their "Alex's Team" shirts, and then I would wear one that said "Alex" on the back and "I have CF" on the front - so, it's right out there that I have CF, so if anyone else does, we should probably keep our distance. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm lucky to not have a terrible form of the cepacia, so it hasn't really impacted my life as much as I had feared when they said I got it. But, we're keeping on top of it.

~Alex
 
M

MissAlexsBP

Guest
Hello!

I just recently cultured cepacia, and honestly, I'm not quite sure how I got it, because I really don't know anyone else with CF (other than online), but I do live in a very rural area, so I probably got it from just being outside. But, it is possible I got it while I was in the hospital for a clean-out. Who knows.
Luckily, my last culture didn't show cepacia, but they said that it probably doesn't mean I don't have it anymore, just that perhaps the sputum that they got didn't have the cepacia, if that makes any sense.
Since I found out I had the cepacia I'm not going to anymore CFF events. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I used to love the walk, but I guess it's better that I don't go.
I know you said you were nervous about brining your daughter, and I don't know if it would help, but before when I went, people would wear their "Alex's Team" shirts, and then I would wear one that said "Alex" on the back and "I have CF" on the front - so, it's right out there that I have CF, so if anyone else does, we should probably keep our distance. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm lucky to not have a terrible form of the cepacia, so it hasn't really impacted my life as much as I had feared when they said I got it. But, we're keeping on top of it.

~Alex
 
M

MissAlexsBP

Guest
Hello!

I just recently cultured cepacia, and honestly, I'm not quite sure how I got it, because I really don't know anyone else with CF (other than online), but I do live in a very rural area, so I probably got it from just being outside. But, it is possible I got it while I was in the hospital for a clean-out. Who knows.
Luckily, my last culture didn't show cepacia, but they said that it probably doesn't mean I don't have it anymore, just that perhaps the sputum that they got didn't have the cepacia, if that makes any sense.
Since I found out I had the cepacia I'm not going to anymore CFF events. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I used to love the walk, but I guess it's better that I don't go.
I know you said you were nervous about brining your daughter, and I don't know if it would help, but before when I went, people would wear their "Alex's Team" shirts, and then I would wear one that said "Alex" on the back and "I have CF" on the front - so, it's right out there that I have CF, so if anyone else does, we should probably keep our distance. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm lucky to not have a terrible form of the cepacia, so it hasn't really impacted my life as much as I had feared when they said I got it. But, we're keeping on top of it.

~Alex
 
M

MissAlexsBP

Guest
Hello!

I just recently cultured cepacia, and honestly, I'm not quite sure how I got it, because I really don't know anyone else with CF (other than online), but I do live in a very rural area, so I probably got it from just being outside. But, it is possible I got it while I was in the hospital for a clean-out. Who knows.
Luckily, my last culture didn't show cepacia, but they said that it probably doesn't mean I don't have it anymore, just that perhaps the sputum that they got didn't have the cepacia, if that makes any sense.
Since I found out I had the cepacia I'm not going to anymore CFF events. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I used to love the walk, but I guess it's better that I don't go.
I know you said you were nervous about brining your daughter, and I don't know if it would help, but before when I went, people would wear their "Alex's Team" shirts, and then I would wear one that said "Alex" on the back and "I have CF" on the front - so, it's right out there that I have CF, so if anyone else does, we should probably keep our distance. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm lucky to not have a terrible form of the cepacia, so it hasn't really impacted my life as much as I had feared when they said I got it. But, we're keeping on top of it.

~Alex
 
M

MissAlexsBP

Guest
Hello!
<br />
<br />I just recently cultured cepacia, and honestly, I'm not quite sure how I got it, because I really don't know anyone else with CF (other than online), but I do live in a very rural area, so I probably got it from just being outside. But, it is possible I got it while I was in the hospital for a clean-out. Who knows.
<br />Luckily, my last culture didn't show cepacia, but they said that it probably doesn't mean I don't have it anymore, just that perhaps the sputum that they got didn't have the cepacia, if that makes any sense.
<br />Since I found out I had the cepacia I'm not going to anymore CFF events. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I used to love the walk, but I guess it's better that I don't go.
<br />I know you said you were nervous about brining your daughter, and I don't know if it would help, but before when I went, people would wear their "Alex's Team" shirts, and then I would wear one that said "Alex" on the back and "I have CF" on the front - so, it's right out there that I have CF, so if anyone else does, we should probably keep our distance. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I'm lucky to not have a terrible form of the cepacia, so it hasn't really impacted my life as much as I had feared when they said I got it. But, we're keeping on top of it.
<br />
<br />~Alex
 
L

laulau555

New member
i also have cepacia. i don't agree that you would get it from CASUAL contact, only CLOSE contact. I believe i got it from a girl in the hospital who was coughing up a lung next to me on a computer. But about 35 people at my hospital all got it around the same time.

I stopped doing things like the walk when they said they didn't want B. Cepacia's around. However, after getting sick of the isolation in the hospital, the isolation from the walk and the support i always loved when i went, i opted to go. as long as its an open space you should be fine. i always use purell, cough into my arm, etc. as for protecting your daughter have her constantly wash her hands, don't touch her mouth/nose and stay away from anyone coughing at these events.

and if it does become inevitable (with stuff in dirt and stuff) she does get it it isn't as bad as CFF makes it out to be. i've had it for 4 years and i've been fine with it.
 
L

laulau555

New member
i also have cepacia. i don't agree that you would get it from CASUAL contact, only CLOSE contact. I believe i got it from a girl in the hospital who was coughing up a lung next to me on a computer. But about 35 people at my hospital all got it around the same time.

I stopped doing things like the walk when they said they didn't want B. Cepacia's around. However, after getting sick of the isolation in the hospital, the isolation from the walk and the support i always loved when i went, i opted to go. as long as its an open space you should be fine. i always use purell, cough into my arm, etc. as for protecting your daughter have her constantly wash her hands, don't touch her mouth/nose and stay away from anyone coughing at these events.

and if it does become inevitable (with stuff in dirt and stuff) she does get it it isn't as bad as CFF makes it out to be. i've had it for 4 years and i've been fine with it.
 
L

laulau555

New member
i also have cepacia. i don't agree that you would get it from CASUAL contact, only CLOSE contact. I believe i got it from a girl in the hospital who was coughing up a lung next to me on a computer. But about 35 people at my hospital all got it around the same time.

I stopped doing things like the walk when they said they didn't want B. Cepacia's around. However, after getting sick of the isolation in the hospital, the isolation from the walk and the support i always loved when i went, i opted to go. as long as its an open space you should be fine. i always use purell, cough into my arm, etc. as for protecting your daughter have her constantly wash her hands, don't touch her mouth/nose and stay away from anyone coughing at these events.

and if it does become inevitable (with stuff in dirt and stuff) she does get it it isn't as bad as CFF makes it out to be. i've had it for 4 years and i've been fine with it.
 
L

laulau555

New member
i also have cepacia. i don't agree that you would get it from CASUAL contact, only CLOSE contact. I believe i got it from a girl in the hospital who was coughing up a lung next to me on a computer. But about 35 people at my hospital all got it around the same time.

I stopped doing things like the walk when they said they didn't want B. Cepacia's around. However, after getting sick of the isolation in the hospital, the isolation from the walk and the support i always loved when i went, i opted to go. as long as its an open space you should be fine. i always use purell, cough into my arm, etc. as for protecting your daughter have her constantly wash her hands, don't touch her mouth/nose and stay away from anyone coughing at these events.

and if it does become inevitable (with stuff in dirt and stuff) she does get it it isn't as bad as CFF makes it out to be. i've had it for 4 years and i've been fine with it.
 
L

laulau555

New member
i also have cepacia. i don't agree that you would get it from CASUAL contact, only CLOSE contact. I believe i got it from a girl in the hospital who was coughing up a lung next to me on a computer. But about 35 people at my hospital all got it around the same time.
<br />
<br />I stopped doing things like the walk when they said they didn't want B. Cepacia's around. However, after getting sick of the isolation in the hospital, the isolation from the walk and the support i always loved when i went, i opted to go. as long as its an open space you should be fine. i always use purell, cough into my arm, etc. as for protecting your daughter have her constantly wash her hands, don't touch her mouth/nose and stay away from anyone coughing at these events.
<br />
<br />and if it does become inevitable (with stuff in dirt and stuff) she does get it it isn't as bad as CFF makes it out to be. i've had it for 4 years and i've been fine with it.
 
T

tammykrumrey

Guest
I understand how scary the Cepacia bug can be. My nephew is 17 and has cultured B. Cepacia now for about 7-8 years. We have no idea how he caught it since at the time the only two people he knew with CF were my daughters, and neither have cultured it. But, he lived on land out in the country that used to be used for raising crops.

Hard to say where it came from, since he had several hospitalization prior to that. But we have been told that there are a small hand full of patients in the St. Louis area (where we live) that culture Cepacia, and none of them are carrying the same Cepacia (which they know by 'fingerprinting' the bacteria-which I think is common practice to make sure it is not a care center epidimic).

My nephew does not attend CFF events, but he does attend the fundraisers that my family holds for the CFF...meaning the events (such as our golf tournament or BBQ and auction) are not sponsored by the foundation, they are by us and we give all the funds raised to the foundation.

I feel bad for all who culture cepacia and totally understand how it can make you feel isolated. My nephew was a great out-going little boy before he started culturing it, and now we have a very angry young man. It really breaks my heart<img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only is he isolated from CFF events, but also contact with his little cousins (my girls) and it has been very hard on him (as well as my entire family).

And don't beleive that a negative culture out of the blue means anything...Dalton had a few negatives in between some positives in the beginning...now they are all positive.
 
T

tammykrumrey

Guest
I understand how scary the Cepacia bug can be. My nephew is 17 and has cultured B. Cepacia now for about 7-8 years. We have no idea how he caught it since at the time the only two people he knew with CF were my daughters, and neither have cultured it. But, he lived on land out in the country that used to be used for raising crops.

Hard to say where it came from, since he had several hospitalization prior to that. But we have been told that there are a small hand full of patients in the St. Louis area (where we live) that culture Cepacia, and none of them are carrying the same Cepacia (which they know by 'fingerprinting' the bacteria-which I think is common practice to make sure it is not a care center epidimic).

My nephew does not attend CFF events, but he does attend the fundraisers that my family holds for the CFF...meaning the events (such as our golf tournament or BBQ and auction) are not sponsored by the foundation, they are by us and we give all the funds raised to the foundation.

I feel bad for all who culture cepacia and totally understand how it can make you feel isolated. My nephew was a great out-going little boy before he started culturing it, and now we have a very angry young man. It really breaks my heart<img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only is he isolated from CFF events, but also contact with his little cousins (my girls) and it has been very hard on him (as well as my entire family).

And don't beleive that a negative culture out of the blue means anything...Dalton had a few negatives in between some positives in the beginning...now they are all positive.
 
T

tammykrumrey

Guest
I understand how scary the Cepacia bug can be. My nephew is 17 and has cultured B. Cepacia now for about 7-8 years. We have no idea how he caught it since at the time the only two people he knew with CF were my daughters, and neither have cultured it. But, he lived on land out in the country that used to be used for raising crops.

Hard to say where it came from, since he had several hospitalization prior to that. But we have been told that there are a small hand full of patients in the St. Louis area (where we live) that culture Cepacia, and none of them are carrying the same Cepacia (which they know by 'fingerprinting' the bacteria-which I think is common practice to make sure it is not a care center epidimic).

My nephew does not attend CFF events, but he does attend the fundraisers that my family holds for the CFF...meaning the events (such as our golf tournament or BBQ and auction) are not sponsored by the foundation, they are by us and we give all the funds raised to the foundation.

I feel bad for all who culture cepacia and totally understand how it can make you feel isolated. My nephew was a great out-going little boy before he started culturing it, and now we have a very angry young man. It really breaks my heart<img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only is he isolated from CFF events, but also contact with his little cousins (my girls) and it has been very hard on him (as well as my entire family).

And don't beleive that a negative culture out of the blue means anything...Dalton had a few negatives in between some positives in the beginning...now they are all positive.
 
T

tammykrumrey

Guest
I understand how scary the Cepacia bug can be. My nephew is 17 and has cultured B. Cepacia now for about 7-8 years. We have no idea how he caught it since at the time the only two people he knew with CF were my daughters, and neither have cultured it. But, he lived on land out in the country that used to be used for raising crops.

Hard to say where it came from, since he had several hospitalization prior to that. But we have been told that there are a small hand full of patients in the St. Louis area (where we live) that culture Cepacia, and none of them are carrying the same Cepacia (which they know by 'fingerprinting' the bacteria-which I think is common practice to make sure it is not a care center epidimic).

My nephew does not attend CFF events, but he does attend the fundraisers that my family holds for the CFF...meaning the events (such as our golf tournament or BBQ and auction) are not sponsored by the foundation, they are by us and we give all the funds raised to the foundation.

I feel bad for all who culture cepacia and totally understand how it can make you feel isolated. My nephew was a great out-going little boy before he started culturing it, and now we have a very angry young man. It really breaks my heart<img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only is he isolated from CFF events, but also contact with his little cousins (my girls) and it has been very hard on him (as well as my entire family).

And don't beleive that a negative culture out of the blue means anything...Dalton had a few negatives in between some positives in the beginning...now they are all positive.
 
T

tammykrumrey

Guest
I understand how scary the Cepacia bug can be. My nephew is 17 and has cultured B. Cepacia now for about 7-8 years. We have no idea how he caught it since at the time the only two people he knew with CF were my daughters, and neither have cultured it. But, he lived on land out in the country that used to be used for raising crops.
<br />
<br />Hard to say where it came from, since he had several hospitalization prior to that. But we have been told that there are a small hand full of patients in the St. Louis area (where we live) that culture Cepacia, and none of them are carrying the same Cepacia (which they know by 'fingerprinting' the bacteria-which I think is common practice to make sure it is not a care center epidimic).
<br />
<br />My nephew does not attend CFF events, but he does attend the fundraisers that my family holds for the CFF...meaning the events (such as our golf tournament or BBQ and auction) are not sponsored by the foundation, they are by us and we give all the funds raised to the foundation.
<br />
<br />I feel bad for all who culture cepacia and totally understand how it can make you feel isolated. My nephew was a great out-going little boy before he started culturing it, and now we have a very angry young man. It really breaks my heart<img src="i/expressions/face-icon-small-sad.gif" border="0"> Not only is he isolated from CFF events, but also contact with his little cousins (my girls) and it has been very hard on him (as well as my entire family).
<br />
<br />And don't beleive that a negative culture out of the blue means anything...Dalton had a few negatives in between some positives in the beginning...now they are all positive.
 
M

MicheleGazelle

New member
When I was first diagnosed, I was so sick that I really didn't have the energy to go. I got flyers from the CF center for educational events but never went. I also felt it would be best to not expose myself to anything new since I was already in such bad shape and that it would be best to not expose others to whatever I had. They ran a lot of tests but never identified anything. I have spent a lot of time in semi-"quarantine" by choice while working on getting well. And it has helped me to gradually get healthier.
 
M

MicheleGazelle

New member
When I was first diagnosed, I was so sick that I really didn't have the energy to go. I got flyers from the CF center for educational events but never went. I also felt it would be best to not expose myself to anything new since I was already in such bad shape and that it would be best to not expose others to whatever I had. They ran a lot of tests but never identified anything. I have spent a lot of time in semi-"quarantine" by choice while working on getting well. And it has helped me to gradually get healthier.
 
M

MicheleGazelle

New member
When I was first diagnosed, I was so sick that I really didn't have the energy to go. I got flyers from the CF center for educational events but never went. I also felt it would be best to not expose myself to anything new since I was already in such bad shape and that it would be best to not expose others to whatever I had. They ran a lot of tests but never identified anything. I have spent a lot of time in semi-"quarantine" by choice while working on getting well. And it has helped me to gradually get healthier.
 
M

MicheleGazelle

New member
When I was first diagnosed, I was so sick that I really didn't have the energy to go. I got flyers from the CF center for educational events but never went. I also felt it would be best to not expose myself to anything new since I was already in such bad shape and that it would be best to not expose others to whatever I had. They ran a lot of tests but never identified anything. I have spent a lot of time in semi-"quarantine" by choice while working on getting well. And it has helped me to gradually get healthier.
 
M

MicheleGazelle

New member
When I was first diagnosed, I was so sick that I really didn't have the energy to go. I got flyers from the CF center for educational events but never went. I also felt it would be best to not expose myself to anything new since I was already in such bad shape and that it would be best to not expose others to whatever I had. They ran a lot of tests but never identified anything. I have spent a lot of time in semi-"quarantine" by choice while working on getting well. And it has helped me to gradually get healthier.
 
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