Advice

[Emily65Roses]

I'm glad your daughter's class did a "mask" project.

I wanted to comment on the cepacia, though (official name: burkholderia cepacia). You want to be really careful with that stuff. I am not a germaphobe at all, but when it comes to cepacia, you have to be very cautious. There are people here who have cepacia and live with it. It's not always immediately fatal. But in addition, one of my friends... her husband had CF. He got cepacia and died about 2 years later. Furthermore, you can't ever get rid of cepacia once you get it... and I think there's all of <u>ONE</u> transplant center in the <b>entire country</b> that will give a lung transplant to a CFer with cepacia.

It can come from onions, though it comes from ones that have gone rotten. I myself love onions, so we always have some in the house. Just get rid of the fuzzy ones and you're all right. Almost all of the time, CFers get cepacia from other CFers, not onions.

I'm not one of the people that advocates CFers staying far away from each other. I've had many CF friends. I met a girl here on this forum and visited her twice in the summer about 2 years ago. I think CF friends are an excellent idea after your child understands the risks and knows how to be careful. You probably want to draw the line at a CFer with cepacia, though. It's unfortunate because cepacia CFers are kind of like the lepers among us. It's really sad and it sucks for them. But given the sh*ttiness of cepacia, I don't really blame the community for "shunning" them. It's just a crappy situation all around.

I don't think you need to stop talking to the mom or anything (there's no need to make her feel even more ostracized as the mother of a CFer with cepacia), but you want to think twice about putting the girls in the same area together.

 

[Emily65Roses]

I'm glad your daughter's class did a "mask" project.

I wanted to comment on the cepacia, though (official name: burkholderia cepacia). You want to be really careful with that stuff. I am not a germaphobe at all, but when it comes to cepacia, you have to be very cautious. There are people here who have cepacia and live with it. It's not always immediately fatal. But in addition, one of my friends... her husband had CF. He got cepacia and died about 2 years later. Furthermore, you can't ever get rid of cepacia once you get it... and I think there's all of <u>ONE</u> transplant center in the <b>entire country</b> that will give a lung transplant to a CFer with cepacia.

It can come from onions, though it comes from ones that have gone rotten. I myself love onions, so we always have some in the house. Just get rid of the fuzzy ones and you're all right. Almost all of the time, CFers get cepacia from other CFers, not onions.

I'm not one of the people that advocates CFers staying far away from each other. I've had many CF friends. I met a girl here on this forum and visited her twice in the summer about 2 years ago. I think CF friends are an excellent idea after your child understands the risks and knows how to be careful. You probably want to draw the line at a CFer with cepacia, though. It's unfortunate because cepacia CFers are kind of like the lepers among us. It's really sad and it sucks for them. But given the sh*ttiness of cepacia, I don't really blame the community for "shunning" them. It's just a crappy situation all around.

I don't think you need to stop talking to the mom or anything (there's no need to make her feel even more ostracized as the mother of a CFer with cepacia), but you want to think twice about putting the girls in the same area together.

 

[Emily65Roses]

I'm glad your daughter's class did a "mask" project.

I wanted to comment on the cepacia, though (official name: burkholderia cepacia). You want to be really careful with that stuff. I am not a germaphobe at all, but when it comes to cepacia, you have to be very cautious. There are people here who have cepacia and live with it. It's not always immediately fatal. But in addition, one of my friends... her husband had CF. He got cepacia and died about 2 years later. Furthermore, you can't ever get rid of cepacia once you get it... and I think there's all of <u>ONE</u> transplant center in the <b>entire country</b> that will give a lung transplant to a CFer with cepacia.

It can come from onions, though it comes from ones that have gone rotten. I myself love onions, so we always have some in the house. Just get rid of the fuzzy ones and you're all right. Almost all of the time, CFers get cepacia from other CFers, not onions.

I'm not one of the people that advocates CFers staying far away from each other. I've had many CF friends. I met a girl here on this forum and visited her twice in the summer about 2 years ago. I think CF friends are an excellent idea after your child understands the risks and knows how to be careful. You probably want to draw the line at a CFer with cepacia, though. It's unfortunate because cepacia CFers are kind of like the lepers among us. It's really sad and it sucks for them. But given the sh*ttiness of cepacia, I don't really blame the community for "shunning" them. It's just a crappy situation all around.

I don't think you need to stop talking to the mom or anything (there's no need to make her feel even more ostracized as the mother of a CFer with cepacia), but you want to think twice about putting the girls in the same area together.

 

[Emily65Roses]

I'm glad your daughter's class did a "mask" project.

I wanted to comment on the cepacia, though (official name: burkholderia cepacia). You want to be really careful with that stuff. I am not a germaphobe at all, but when it comes to cepacia, you have to be very cautious. There are people here who have cepacia and live with it. It's not always immediately fatal. But in addition, one of my friends... her husband had CF. He got cepacia and died about 2 years later. Furthermore, you can't ever get rid of cepacia once you get it... and I think there's all of <u>ONE</u> transplant center in the <b>entire country</b> that will give a lung transplant to a CFer with cepacia.

It can come from onions, though it comes from ones that have gone rotten. I myself love onions, so we always have some in the house. Just get rid of the fuzzy ones and you're all right. Almost all of the time, CFers get cepacia from other CFers, not onions.

I'm not one of the people that advocates CFers staying far away from each other. I've had many CF friends. I met a girl here on this forum and visited her twice in the summer about 2 years ago. I think CF friends are an excellent idea after your child understands the risks and knows how to be careful. You probably want to draw the line at a CFer with cepacia, though. It's unfortunate because cepacia CFers are kind of like the lepers among us. It's really sad and it sucks for them. But given the sh*ttiness of cepacia, I don't really blame the community for "shunning" them. It's just a crappy situation all around.

I don't think you need to stop talking to the mom or anything (there's no need to make her feel even more ostracized as the mother of a CFer with cepacia), but you want to think twice about putting the girls in the same area together.

 

[Emily65Roses]

I'm glad your daughter's class did a "mask" project.

I wanted to comment on the cepacia, though (official name: burkholderia cepacia). You want to be really careful with that stuff. I am not a germaphobe at all, but when it comes to cepacia, you have to be very cautious. There are people here who have cepacia and live with it. It's not always immediately fatal. But in addition, one of my friends... her husband had CF. He got cepacia and died about 2 years later. Furthermore, you can't ever get rid of cepacia once you get it... and I think there's all of <u>ONE</u> transplant center in the <b>entire country</b> that will give a lung transplant to a CFer with cepacia.

It can come from onions, though it comes from ones that have gone rotten. I myself love onions, so we always have some in the house. Just get rid of the fuzzy ones and you're all right. Almost all of the time, CFers get cepacia from other CFers, not onions.

I'm not one of the people that advocates CFers staying far away from each other. I've had many CF friends. I met a girl here on this forum and visited her twice in the summer about 2 years ago. I think CF friends are an excellent idea after your child understands the risks and knows how to be careful. You probably want to draw the line at a CFer with cepacia, though. It's unfortunate because cepacia CFers are kind of like the lepers among us. It's really sad and it sucks for them. But given the sh*ttiness of cepacia, I don't really blame the community for "shunning" them. It's just a crappy situation all around.

I don't think you need to stop talking to the mom or anything (there's no need to make her feel even more ostracized as the mother of a CFer with cepacia), but you want to think twice about putting the girls in the same area together.

 

[mom4holly]

I discussed Cepacia with the little girls mother & she agreed that it could be dangerous for my duaghter-I also agree with not ostracizing her becuase she is a great source of advice for me because I don't physically know anyone else with CF or that has children with CF so she understands when we are having a bad morning because of late treatments & other stuff.

My doc says he is going to continue to test for Cepecia since the girls both go to the same school. My doc also agrees that it is so unlikely for children of the exact same age to go to the exact same school so I'm assuming he wasn't expecting this one.

I do feel extremely bad for this little girl & her mother though becuase now I know that her "sentence" has just been made that much worse then just having CF.

Thank you for helping more with the Cepacia.

 

[mom4holly]

I discussed Cepacia with the little girls mother & she agreed that it could be dangerous for my duaghter-I also agree with not ostracizing her becuase she is a great source of advice for me because I don't physically know anyone else with CF or that has children with CF so she understands when we are having a bad morning because of late treatments & other stuff.

My doc says he is going to continue to test for Cepecia since the girls both go to the same school. My doc also agrees that it is so unlikely for children of the exact same age to go to the exact same school so I'm assuming he wasn't expecting this one.

I do feel extremely bad for this little girl & her mother though becuase now I know that her "sentence" has just been made that much worse then just having CF.

Thank you for helping more with the Cepacia.

 

[mom4holly]

I discussed Cepacia with the little girls mother & she agreed that it could be dangerous for my duaghter-I also agree with not ostracizing her becuase she is a great source of advice for me because I don't physically know anyone else with CF or that has children with CF so she understands when we are having a bad morning because of late treatments & other stuff.

My doc says he is going to continue to test for Cepecia since the girls both go to the same school. My doc also agrees that it is so unlikely for children of the exact same age to go to the exact same school so I'm assuming he wasn't expecting this one.

I do feel extremely bad for this little girl & her mother though becuase now I know that her "sentence" has just been made that much worse then just having CF.

Thank you for helping more with the Cepacia.

 

[mom4holly]

I discussed Cepacia with the little girls mother & she agreed that it could be dangerous for my duaghter-I also agree with not ostracizing her becuase she is a great source of advice for me because I don't physically know anyone else with CF or that has children with CF so she understands when we are having a bad morning because of late treatments & other stuff.

My doc says he is going to continue to test for Cepecia since the girls both go to the same school. My doc also agrees that it is so unlikely for children of the exact same age to go to the exact same school so I'm assuming he wasn't expecting this one.

I do feel extremely bad for this little girl & her mother though becuase now I know that her "sentence" has just been made that much worse then just having CF.

Thank you for helping more with the Cepacia.

 

[mom4holly]

I discussed Cepacia with the little girls mother & she agreed that it could be dangerous for my duaghter-I also agree with not ostracizing her becuase she is a great source of advice for me because I don't physically know anyone else with CF or that has children with CF so she understands when we are having a bad morning because of late treatments & other stuff.

My doc says he is going to continue to test for Cepecia since the girls both go to the same school. My doc also agrees that it is so unlikely for children of the exact same age to go to the exact same school so I'm assuming he wasn't expecting this one.

I do feel extremely bad for this little girl & her mother though becuase now I know that her "sentence" has just been made that much worse then just having CF.

Thank you for helping more with the Cepacia.

 

[JustDucky]

I am glad that the kids in Holly's class were into the masks..that is a pretty good idea to decorate them. I know how hard it must be for a kid to be different and stick out, anything to make that easier is worth a try.

I do have cepacia, been cultering that one for over two years, it does make it harder to clear infections because of the resistance of that bug. I don't go to clinic on the regular days, my doc makes an appointment on a different day of the week so that I am not mixed with the CF'ers who don't have cepacia.
Every time your daughter gets a culture on her sputum, the docs look for cepacia as well. I know that my clinic labels my sputum CF sputum so that the micros in the lab knows how to plate the sample as cepacia can be tricky to grow in a lab. Not only do they look for bugs like cepacia, they also look for other pathogens that a CF'er might pick up such as pseudomonas, staph a. , MRSA (resistant staph), aspergillus, MAC....the list goes on.

I know of alot of members here who have been living with cepacia for years, even over a decade. Cepacia can affect a CF'er in one of three ways: one, and this one being the most severe case scenario, the person declines very rapidy. Two, there is a slower decline of lung function. Three, no real change other than CF progression. I guess it depends on the person and the type of cepacia on how it affects them. In my case, it has been a slower decline for me but I do find myself needing IV's quite often.

I hope that all works out for you guys, having kids are tough enough. Hugs, Jenn

 

[JustDucky]

I am glad that the kids in Holly's class were into the masks..that is a pretty good idea to decorate them. I know how hard it must be for a kid to be different and stick out, anything to make that easier is worth a try.

I do have cepacia, been cultering that one for over two years, it does make it harder to clear infections because of the resistance of that bug. I don't go to clinic on the regular days, my doc makes an appointment on a different day of the week so that I am not mixed with the CF'ers who don't have cepacia.
Every time your daughter gets a culture on her sputum, the docs look for cepacia as well. I know that my clinic labels my sputum CF sputum so that the micros in the lab knows how to plate the sample as cepacia can be tricky to grow in a lab. Not only do they look for bugs like cepacia, they also look for other pathogens that a CF'er might pick up such as pseudomonas, staph a. , MRSA (resistant staph), aspergillus, MAC....the list goes on.

I know of alot of members here who have been living with cepacia for years, even over a decade. Cepacia can affect a CF'er in one of three ways: one, and this one being the most severe case scenario, the person declines very rapidy. Two, there is a slower decline of lung function. Three, no real change other than CF progression. I guess it depends on the person and the type of cepacia on how it affects them. In my case, it has been a slower decline for me but I do find myself needing IV's quite often.

I hope that all works out for you guys, having kids are tough enough. Hugs, Jenn

 

[JustDucky]

I am glad that the kids in Holly's class were into the masks..that is a pretty good idea to decorate them. I know how hard it must be for a kid to be different and stick out, anything to make that easier is worth a try.

I do have cepacia, been cultering that one for over two years, it does make it harder to clear infections because of the resistance of that bug. I don't go to clinic on the regular days, my doc makes an appointment on a different day of the week so that I am not mixed with the CF'ers who don't have cepacia.
Every time your daughter gets a culture on her sputum, the docs look for cepacia as well. I know that my clinic labels my sputum CF sputum so that the micros in the lab knows how to plate the sample as cepacia can be tricky to grow in a lab. Not only do they look for bugs like cepacia, they also look for other pathogens that a CF'er might pick up such as pseudomonas, staph a. , MRSA (resistant staph), aspergillus, MAC....the list goes on.

I know of alot of members here who have been living with cepacia for years, even over a decade. Cepacia can affect a CF'er in one of three ways: one, and this one being the most severe case scenario, the person declines very rapidy. Two, there is a slower decline of lung function. Three, no real change other than CF progression. I guess it depends on the person and the type of cepacia on how it affects them. In my case, it has been a slower decline for me but I do find myself needing IV's quite often.

I hope that all works out for you guys, having kids are tough enough. Hugs, Jenn

 

[JustDucky]

I am glad that the kids in Holly's class were into the masks..that is a pretty good idea to decorate them. I know how hard it must be for a kid to be different and stick out, anything to make that easier is worth a try.

I do have cepacia, been cultering that one for over two years, it does make it harder to clear infections because of the resistance of that bug. I don't go to clinic on the regular days, my doc makes an appointment on a different day of the week so that I am not mixed with the CF'ers who don't have cepacia.
Every time your daughter gets a culture on her sputum, the docs look for cepacia as well. I know that my clinic labels my sputum CF sputum so that the micros in the lab knows how to plate the sample as cepacia can be tricky to grow in a lab. Not only do they look for bugs like cepacia, they also look for other pathogens that a CF'er might pick up such as pseudomonas, staph a. , MRSA (resistant staph), aspergillus, MAC....the list goes on.

I know of alot of members here who have been living with cepacia for years, even over a decade. Cepacia can affect a CF'er in one of three ways: one, and this one being the most severe case scenario, the person declines very rapidy. Two, there is a slower decline of lung function. Three, no real change other than CF progression. I guess it depends on the person and the type of cepacia on how it affects them. In my case, it has been a slower decline for me but I do find myself needing IV's quite often.

I hope that all works out for you guys, having kids are tough enough. Hugs, Jenn

 

[JustDucky]

I am glad that the kids in Holly's class were into the masks..that is a pretty good idea to decorate them. I know how hard it must be for a kid to be different and stick out, anything to make that easier is worth a try.

I do have cepacia, been cultering that one for over two years, it does make it harder to clear infections because of the resistance of that bug. I don't go to clinic on the regular days, my doc makes an appointment on a different day of the week so that I am not mixed with the CF'ers who don't have cepacia.
Every time your daughter gets a culture on her sputum, the docs look for cepacia as well. I know that my clinic labels my sputum CF sputum so that the micros in the lab knows how to plate the sample as cepacia can be tricky to grow in a lab. Not only do they look for bugs like cepacia, they also look for other pathogens that a CF'er might pick up such as pseudomonas, staph a. , MRSA (resistant staph), aspergillus, MAC....the list goes on.

I know of alot of members here who have been living with cepacia for years, even over a decade. Cepacia can affect a CF'er in one of three ways: one, and this one being the most severe case scenario, the person declines very rapidy. Two, there is a slower decline of lung function. Three, no real change other than CF progression. I guess it depends on the person and the type of cepacia on how it affects them. In my case, it has been a slower decline for me but I do find myself needing IV's quite often.

I hope that all works out for you guys, having kids are tough enough. Hugs, Jenn