could it be cepacia?

W

winifredmary

New member
Hi Tammy....we have never "met", but i just wanted to tell you that you will be ok....i have had cepacia since i was diagnosed in 1980!! There is a stigma, but remember...it can be "caught" anywhere!! It could be in the soil that the two kids play in. No matter how careful you were...you can't see this friggin bug!! There is no telling where she got it. I bet she didn't even get it from your nephew. It really can be anywhere. Please don't blame yourself. We all must live our lives. If we lived in a bubble...what kind of life would that be?? Not a very good one, that is for sure!! It may be somewhere in your town, or in the hospital, or maybe they both got it at the same time, but kayla's never showed up until now. It can "hide" for a long time!!! Well, enough said, and take care!!<img src="i/expressions/heart.gif" border="0">

Hugs
Laurie 41 w/cf
 
W

winifredmary

New member
Hi Tammy....we have never "met", but i just wanted to tell you that you will be ok....i have had cepacia since i was diagnosed in 1980!! There is a stigma, but remember...it can be "caught" anywhere!! It could be in the soil that the two kids play in. No matter how careful you were...you can't see this friggin bug!! There is no telling where she got it. I bet she didn't even get it from your nephew. It really can be anywhere. Please don't blame yourself. We all must live our lives. If we lived in a bubble...what kind of life would that be?? Not a very good one, that is for sure!! It may be somewhere in your town, or in the hospital, or maybe they both got it at the same time, but kayla's never showed up until now. It can "hide" for a long time!!! Well, enough said, and take care!!<img src="i/expressions/heart.gif" border="0">

Hugs
Laurie 41 w/cf
 
W

winifredmary

New member
Hi Tammy....we have never "met", but i just wanted to tell you that you will be ok....i have had cepacia since i was diagnosed in 1980!! There is a stigma, but remember...it can be "caught" anywhere!! It could be in the soil that the two kids play in. No matter how careful you were...you can't see this friggin bug!! There is no telling where she got it. I bet she didn't even get it from your nephew. It really can be anywhere. Please don't blame yourself. We all must live our lives. If we lived in a bubble...what kind of life would that be?? Not a very good one, that is for sure!! It may be somewhere in your town, or in the hospital, or maybe they both got it at the same time, but kayla's never showed up until now. It can "hide" for a long time!!! Well, enough said, and take care!!<img src="i/expressions/heart.gif" border="0">

Hugs
Laurie 41 w/cf
 
W

winifredmary

New member
Hi Tammy....we have never "met", but i just wanted to tell you that you will be ok....i have had cepacia since i was diagnosed in 1980!! There is a stigma, but remember...it can be "caught" anywhere!! It could be in the soil that the two kids play in. No matter how careful you were...you can't see this friggin bug!! There is no telling where she got it. I bet she didn't even get it from your nephew. It really can be anywhere. Please don't blame yourself. We all must live our lives. If we lived in a bubble...what kind of life would that be?? Not a very good one, that is for sure!! It may be somewhere in your town, or in the hospital, or maybe they both got it at the same time, but kayla's never showed up until now. It can "hide" for a long time!!! Well, enough said, and take care!!<img src="i/expressions/heart.gif" border="0">

Hugs
Laurie 41 w/cf
 
W

winifredmary

New member
Hi Tammy....we have never "met", but i just wanted to tell you that you will be ok....i have had cepacia since i was diagnosed in 1980!! There is a stigma, but remember...it can be "caught" anywhere!! It could be in the soil that the two kids play in. No matter how careful you were...you can't see this friggin bug!! There is no telling where she got it. I bet she didn't even get it from your nephew. It really can be anywhere. Please don't blame yourself. We all must live our lives. If we lived in a bubble...what kind of life would that be?? Not a very good one, that is for sure!! It may be somewhere in your town, or in the hospital, or maybe they both got it at the same time, but kayla's never showed up until now. It can "hide" for a long time!!! Well, enough said, and take care!!<img src="i/expressions/heart.gif" border="0">
<br />
<br />Hugs
<br />Laurie 41 w/cf
 
L

LouLou

New member
I'm praying for peace, love and understanding and a good genomovar in your household and family! What is the genomovar (class #) of cepacia she has? vs. Dalton's? I'm sure your and your dh head's are swirling with thoughts and questions...Wow. Just remember the news will definitely get easier with time.

I'm imagining your disscusions aren't easy...How to break it to the girls? Do you break it to them? Do you change your policy with Dalton? Do you make rules for the girls regarding cross contamination?

Be positive.

Great things are coming that will keep the girls lungs very healthy. That bug won't want any part of their lungs. Picture the tissue beautifully pink and infection free.

My closest friend on this site has had cepacia since age 12. She has a beautiful life as a mommy, wife, artist, world traveler...she's doing great things with her life. And is very healthy.

Try to drop the stigma from this point forward in your household. It won't help a thing. Good luck and stay with us. We're here for you.
 
L

LouLou

New member
I'm praying for peace, love and understanding and a good genomovar in your household and family! What is the genomovar (class #) of cepacia she has? vs. Dalton's? I'm sure your and your dh head's are swirling with thoughts and questions...Wow. Just remember the news will definitely get easier with time.

I'm imagining your disscusions aren't easy...How to break it to the girls? Do you break it to them? Do you change your policy with Dalton? Do you make rules for the girls regarding cross contamination?

Be positive.

Great things are coming that will keep the girls lungs very healthy. That bug won't want any part of their lungs. Picture the tissue beautifully pink and infection free.

My closest friend on this site has had cepacia since age 12. She has a beautiful life as a mommy, wife, artist, world traveler...she's doing great things with her life. And is very healthy.

Try to drop the stigma from this point forward in your household. It won't help a thing. Good luck and stay with us. We're here for you.
 
L

LouLou

New member
I'm praying for peace, love and understanding and a good genomovar in your household and family! What is the genomovar (class #) of cepacia she has? vs. Dalton's? I'm sure your and your dh head's are swirling with thoughts and questions...Wow. Just remember the news will definitely get easier with time.

I'm imagining your disscusions aren't easy...How to break it to the girls? Do you break it to them? Do you change your policy with Dalton? Do you make rules for the girls regarding cross contamination?

Be positive.

Great things are coming that will keep the girls lungs very healthy. That bug won't want any part of their lungs. Picture the tissue beautifully pink and infection free.

My closest friend on this site has had cepacia since age 12. She has a beautiful life as a mommy, wife, artist, world traveler...she's doing great things with her life. And is very healthy.

Try to drop the stigma from this point forward in your household. It won't help a thing. Good luck and stay with us. We're here for you.
 
L

LouLou

New member
I'm praying for peace, love and understanding and a good genomovar in your household and family! What is the genomovar (class #) of cepacia she has? vs. Dalton's? I'm sure your and your dh head's are swirling with thoughts and questions...Wow. Just remember the news will definitely get easier with time.

I'm imagining your disscusions aren't easy...How to break it to the girls? Do you break it to them? Do you change your policy with Dalton? Do you make rules for the girls regarding cross contamination?

Be positive.

Great things are coming that will keep the girls lungs very healthy. That bug won't want any part of their lungs. Picture the tissue beautifully pink and infection free.

My closest friend on this site has had cepacia since age 12. She has a beautiful life as a mommy, wife, artist, world traveler...she's doing great things with her life. And is very healthy.

Try to drop the stigma from this point forward in your household. It won't help a thing. Good luck and stay with us. We're here for you.
 
L

LouLou

New member
I'm praying for peace, love and understanding and a good genomovar in your household and family! What is the genomovar (class #) of cepacia she has? vs. Dalton's? I'm sure your and your dh head's are swirling with thoughts and questions...Wow. Just remember the news will definitely get easier with time.
<br />
<br />I'm imagining your disscusions aren't easy...How to break it to the girls? Do you break it to them? Do you change your policy with Dalton? Do you make rules for the girls regarding cross contamination?
<br />
<br />Be positive.
<br />
<br />Great things are coming that will keep the girls lungs very healthy. That bug won't want any part of their lungs. Picture the tissue beautifully pink and infection free.
<br />
<br />My closest friend on this site has had cepacia since age 12. She has a beautiful life as a mommy, wife, artist, world traveler...she's doing great things with her life. And is very healthy.
<br />
<br />Try to drop the stigma from this point forward in your household. It won't help a thing. Good luck and stay with us. We're here for you.
 
D

Diane

New member
Tammy i am sorry to hear about the cepacia. I have had it for almost 12 years now and i can tell you a few things that may make you feel better about the situation.
I have been around cf patients, had them as roommates, friends i got together with, shared very close proximity and after they passed away i never was near another cf patient again.
So where did i get my cepacia? In the hospital, my first stay for my sinus surgery.
After doing much research about cepacia i found out all the numerous places that you can find cepacia. Damp moist places, rotting onions, golf courses, some fertilizers, it can also be airbourne. So it may be VERY likely she did not get it from your nephew. Cepacia is not always the death sentence it used to be known as. There is also the possibility she may irradicate it, since it is so newly acquired. Some people are barely affected by it. Theres truely no way to know how it will affect your daughter till some time passes and you see what it does.
My advice is to be very proactive about your daughters care ( you probably already were) Be very aggressive and insist on her Dr.s being aggresive in tackling infections and illnesses. Dont allow the cepacia to get its foot in the door so to speak. If she ever feels sick.... insist something be done NOW, and not wait a few days in hopes its just a passing thing. The more aggressively you treat this bug the better she may do with it.
 
D

Diane

New member
Tammy i am sorry to hear about the cepacia. I have had it for almost 12 years now and i can tell you a few things that may make you feel better about the situation.
I have been around cf patients, had them as roommates, friends i got together with, shared very close proximity and after they passed away i never was near another cf patient again.
So where did i get my cepacia? In the hospital, my first stay for my sinus surgery.
After doing much research about cepacia i found out all the numerous places that you can find cepacia. Damp moist places, rotting onions, golf courses, some fertilizers, it can also be airbourne. So it may be VERY likely she did not get it from your nephew. Cepacia is not always the death sentence it used to be known as. There is also the possibility she may irradicate it, since it is so newly acquired. Some people are barely affected by it. Theres truely no way to know how it will affect your daughter till some time passes and you see what it does.
My advice is to be very proactive about your daughters care ( you probably already were) Be very aggressive and insist on her Dr.s being aggresive in tackling infections and illnesses. Dont allow the cepacia to get its foot in the door so to speak. If she ever feels sick.... insist something be done NOW, and not wait a few days in hopes its just a passing thing. The more aggressively you treat this bug the better she may do with it.
 
D

Diane

New member
Tammy i am sorry to hear about the cepacia. I have had it for almost 12 years now and i can tell you a few things that may make you feel better about the situation.
I have been around cf patients, had them as roommates, friends i got together with, shared very close proximity and after they passed away i never was near another cf patient again.
So where did i get my cepacia? In the hospital, my first stay for my sinus surgery.
After doing much research about cepacia i found out all the numerous places that you can find cepacia. Damp moist places, rotting onions, golf courses, some fertilizers, it can also be airbourne. So it may be VERY likely she did not get it from your nephew. Cepacia is not always the death sentence it used to be known as. There is also the possibility she may irradicate it, since it is so newly acquired. Some people are barely affected by it. Theres truely no way to know how it will affect your daughter till some time passes and you see what it does.
My advice is to be very proactive about your daughters care ( you probably already were) Be very aggressive and insist on her Dr.s being aggresive in tackling infections and illnesses. Dont allow the cepacia to get its foot in the door so to speak. If she ever feels sick.... insist something be done NOW, and not wait a few days in hopes its just a passing thing. The more aggressively you treat this bug the better she may do with it.
 
D

Diane

New member
Tammy i am sorry to hear about the cepacia. I have had it for almost 12 years now and i can tell you a few things that may make you feel better about the situation.
I have been around cf patients, had them as roommates, friends i got together with, shared very close proximity and after they passed away i never was near another cf patient again.
So where did i get my cepacia? In the hospital, my first stay for my sinus surgery.
After doing much research about cepacia i found out all the numerous places that you can find cepacia. Damp moist places, rotting onions, golf courses, some fertilizers, it can also be airbourne. So it may be VERY likely she did not get it from your nephew. Cepacia is not always the death sentence it used to be known as. There is also the possibility she may irradicate it, since it is so newly acquired. Some people are barely affected by it. Theres truely no way to know how it will affect your daughter till some time passes and you see what it does.
My advice is to be very proactive about your daughters care ( you probably already were) Be very aggressive and insist on her Dr.s being aggresive in tackling infections and illnesses. Dont allow the cepacia to get its foot in the door so to speak. If she ever feels sick.... insist something be done NOW, and not wait a few days in hopes its just a passing thing. The more aggressively you treat this bug the better she may do with it.
 
D

Diane

New member
Tammy i am sorry to hear about the cepacia. I have had it for almost 12 years now and i can tell you a few things that may make you feel better about the situation.
<br /> I have been around cf patients, had them as roommates, friends i got together with, shared very close proximity and after they passed away i never was near another cf patient again.
<br /> So where did i get my cepacia? In the hospital, my first stay for my sinus surgery.
<br /> After doing much research about cepacia i found out all the numerous places that you can find cepacia. Damp moist places, rotting onions, golf courses, some fertilizers, it can also be airbourne. So it may be VERY likely she did not get it from your nephew. Cepacia is not always the death sentence it used to be known as. There is also the possibility she may irradicate it, since it is so newly acquired. Some people are barely affected by it. Theres truely no way to know how it will affect your daughter till some time passes and you see what it does.
<br /> My advice is to be very proactive about your daughters care ( you probably already were) Be very aggressive and insist on her Dr.s being aggresive in tackling infections and illnesses. Dont allow the cepacia to get its foot in the door so to speak. If she ever feels sick.... insist something be done NOW, and not wait a few days in hopes its just a passing thing. The more aggressively you treat this bug the better she may do with it.
 
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