I am in hospital

M

moxie1

Guest
Hi Carly,

Had to pipe in here. I culture cenocepacia which is the "worst one". I too was scared to death. That was over 15 years ago.

My lung function has remained stable and I have not had any hospitalizations other than for hemoptysis (which was an issue before the cepacia existed).

My point is that just because cepacia might have been bad for someone else, it doesn't mean that it will effect you the same way.

Every patient is different, so try not to stress out about it too much.

I have also heard of people getting rid of cepacia. If you have just started to colonize it, I would have your doctor wham the heck out of it with IVs. I believe I have heard that Tobi/Aztreonam is a great combination. Don't take my word on that though...try googling it.

Take care,
Becki
 
M

moxie1

Guest
Hi Carly,

Had to pipe in here. I culture cenocepacia which is the "worst one". I too was scared to death. That was over 15 years ago.

My lung function has remained stable and I have not had any hospitalizations other than for hemoptysis (which was an issue before the cepacia existed).

My point is that just because cepacia might have been bad for someone else, it doesn't mean that it will effect you the same way.

Every patient is different, so try not to stress out about it too much.

I have also heard of people getting rid of cepacia. If you have just started to colonize it, I would have your doctor wham the heck out of it with IVs. I believe I have heard that Tobi/Aztreonam is a great combination. Don't take my word on that though...try googling it.

Take care,
Becki
 
M

moxie1

Guest
Hi Carly,

Had to pipe in here. I culture cenocepacia which is the "worst one". I too was scared to death. That was over 15 years ago.

My lung function has remained stable and I have not had any hospitalizations other than for hemoptysis (which was an issue before the cepacia existed).

My point is that just because cepacia might have been bad for someone else, it doesn't mean that it will effect you the same way.

Every patient is different, so try not to stress out about it too much.

I have also heard of people getting rid of cepacia. If you have just started to colonize it, I would have your doctor wham the heck out of it with IVs. I believe I have heard that Tobi/Aztreonam is a great combination. Don't take my word on that though...try googling it.

Take care,
Becki
 
M

moxie1

Guest
Hi Carly,

Had to pipe in here. I culture cenocepacia which is the "worst one". I too was scared to death. That was over 15 years ago.

My lung function has remained stable and I have not had any hospitalizations other than for hemoptysis (which was an issue before the cepacia existed).

My point is that just because cepacia might have been bad for someone else, it doesn't mean that it will effect you the same way.

Every patient is different, so try not to stress out about it too much.

I have also heard of people getting rid of cepacia. If you have just started to colonize it, I would have your doctor wham the heck out of it with IVs. I believe I have heard that Tobi/Aztreonam is a great combination. Don't take my word on that though...try googling it.

Take care,
Becki
 
M

moxie1

Guest
Hi Carly,
<br />
<br />Had to pipe in here. I culture cenocepacia which is the "worst one". I too was scared to death. That was over 15 years ago.
<br />
<br />My lung function has remained stable and I have not had any hospitalizations other than for hemoptysis (which was an issue before the cepacia existed).
<br />
<br />My point is that just because cepacia might have been bad for someone else, it doesn't mean that it will effect you the same way.
<br />
<br />Every patient is different, so try not to stress out about it too much.
<br />
<br />I have also heard of people getting rid of cepacia. If you have just started to colonize it, I would have your doctor wham the heck out of it with IVs. I believe I have heard that Tobi/Aztreonam is a great combination. Don't take my word on that though...try googling it.
<br />
<br />Take care,
<br />Becki
 
B

beleache

New member
Hi Carly,

I dont have anything to add, just wanted to say hang in there.. {{{{hugs}}}} to you...

<img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Carly,

I dont have anything to add, just wanted to say hang in there.. {{{{hugs}}}} to you...

<img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Carly,

I dont have anything to add, just wanted to say hang in there.. {{{{hugs}}}} to you...

<img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Carly,

I dont have anything to add, just wanted to say hang in there.. {{{{hugs}}}} to you...

<img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Carly,
<br />
<br /> I dont have anything to add, just wanted to say hang in there.. {{{{hugs}}}} to you...
<br />
<br /> <img src="i/expressions/heart.gif" border="0"> joni
 
M

mamaScarlett

Active member
stay strong carly-right now you need good vibes to help fight off whatever is going on inside you. try not to be negative-i know its hard. yes, its another thing to add the lousy cf list, but its ok. yes, you have to find out what strain you have and then get information-from your DOCTOR-about that strain.
i have had b.cep for 14 years. it doesn't impact my cf very much at all and there is a school of thought by many docs that think the b.cep (while it is a nasty bug)-it keeps other bad bugs at bay. (like mrsa, staph, pseudo...ect) This is all new to you-thats why its scary.
The key it getting somewhat under control. This will take a little while for you. But soon it will be as routine as the rest of your cf care.
Hang in there!
 
M

mamaScarlett

Active member
stay strong carly-right now you need good vibes to help fight off whatever is going on inside you. try not to be negative-i know its hard. yes, its another thing to add the lousy cf list, but its ok. yes, you have to find out what strain you have and then get information-from your DOCTOR-about that strain.
i have had b.cep for 14 years. it doesn't impact my cf very much at all and there is a school of thought by many docs that think the b.cep (while it is a nasty bug)-it keeps other bad bugs at bay. (like mrsa, staph, pseudo...ect) This is all new to you-thats why its scary.
The key it getting somewhat under control. This will take a little while for you. But soon it will be as routine as the rest of your cf care.
Hang in there!
 
M

mamaScarlett

Active member
stay strong carly-right now you need good vibes to help fight off whatever is going on inside you. try not to be negative-i know its hard. yes, its another thing to add the lousy cf list, but its ok. yes, you have to find out what strain you have and then get information-from your DOCTOR-about that strain.
i have had b.cep for 14 years. it doesn't impact my cf very much at all and there is a school of thought by many docs that think the b.cep (while it is a nasty bug)-it keeps other bad bugs at bay. (like mrsa, staph, pseudo...ect) This is all new to you-thats why its scary.
The key it getting somewhat under control. This will take a little while for you. But soon it will be as routine as the rest of your cf care.
Hang in there!
 
M

mamaScarlett

Active member
stay strong carly-right now you need good vibes to help fight off whatever is going on inside you. try not to be negative-i know its hard. yes, its another thing to add the lousy cf list, but its ok. yes, you have to find out what strain you have and then get information-from your DOCTOR-about that strain.
i have had b.cep for 14 years. it doesn't impact my cf very much at all and there is a school of thought by many docs that think the b.cep (while it is a nasty bug)-it keeps other bad bugs at bay. (like mrsa, staph, pseudo...ect) This is all new to you-thats why its scary.
The key it getting somewhat under control. This will take a little while for you. But soon it will be as routine as the rest of your cf care.
Hang in there!
 
M

mamaScarlett

Active member
stay strong carly-right now you need good vibes to help fight off whatever is going on inside you. try not to be negative-i know its hard. yes, its another thing to add the lousy cf list, but its ok. yes, you have to find out what strain you have and then get information-from your DOCTOR-about that strain.
<br />i have had b.cep for 14 years. it doesn't impact my cf very much at all and there is a school of thought by many docs that think the b.cep (while it is a nasty bug)-it keeps other bad bugs at bay. (like mrsa, staph, pseudo...ect) This is all new to you-thats why its scary.
<br />The key it getting somewhat under control. This will take a little while for you. But soon it will be as routine as the rest of your cf care.
<br />Hang in there!
 
B

BaylorCrew07

New member
Carly,

No additional info here...just wanted to say that I'm thinking about you and I'm sorry for your diagnosis. A lot of the previous posts do sound encouraging; stay strong
<img src="i/expressions/hugging.gif" border="0">
 
B

BaylorCrew07

New member
Carly,

No additional info here...just wanted to say that I'm thinking about you and I'm sorry for your diagnosis. A lot of the previous posts do sound encouraging; stay strong
<img src="i/expressions/hugging.gif" border="0">
 
B

BaylorCrew07

New member
Carly,

No additional info here...just wanted to say that I'm thinking about you and I'm sorry for your diagnosis. A lot of the previous posts do sound encouraging; stay strong
<img src="i/expressions/hugging.gif" border="0">
 
B

BaylorCrew07

New member
Carly,

No additional info here...just wanted to say that I'm thinking about you and I'm sorry for your diagnosis. A lot of the previous posts do sound encouraging; stay strong
<img src="i/expressions/hugging.gif" border="0">
 
B

BaylorCrew07

New member
Carly,
<br />
<br />No additional info here...just wanted to say that I'm thinking about you and I'm sorry for your diagnosis. A lot of the previous posts do sound encouraging; stay strong
<br /><img src="i/expressions/hugging.gif" border="0">
 
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