I was just diagnosed with B. Cepacia! What is B. Cepacia???

S

Sweetness81

New member
I just got out of the hospital a couple weeks ago, and my cf team told me that I have B. Cepacia. They explained that I grow staph bacteria in my lungs because of it. That it is extremely hard to kill with antibiotics. I am supposed to enter into an inhaled antibiotic trial for this bacteria in a couple of months. I keep getting told that this bacteria is pretty bad.

Can anyone please tell me what kinds of things that this bacteria can do to the cf patients lungs? I honestly do not know much else about it. I welcome anyone's advise and knowledge of this.

Thanks!

Mary 28 w/cf
 
S

Sweetness81

New member
I just got out of the hospital a couple weeks ago, and my cf team told me that I have B. Cepacia. They explained that I grow staph bacteria in my lungs because of it. That it is extremely hard to kill with antibiotics. I am supposed to enter into an inhaled antibiotic trial for this bacteria in a couple of months. I keep getting told that this bacteria is pretty bad.

Can anyone please tell me what kinds of things that this bacteria can do to the cf patients lungs? I honestly do not know much else about it. I welcome anyone's advise and knowledge of this.

Thanks!

Mary 28 w/cf
 
S

Sweetness81

New member
I just got out of the hospital a couple weeks ago, and my cf team told me that I have B. Cepacia. They explained that I grow staph bacteria in my lungs because of it. That it is extremely hard to kill with antibiotics. I am supposed to enter into an inhaled antibiotic trial for this bacteria in a couple of months. I keep getting told that this bacteria is pretty bad.

Can anyone please tell me what kinds of things that this bacteria can do to the cf patients lungs? I honestly do not know much else about it. I welcome anyone's advise and knowledge of this.

Thanks!

Mary 28 w/cf
 
S

Sweetness81

New member
I just got out of the hospital a couple weeks ago, and my cf team told me that I have B. Cepacia. They explained that I grow staph bacteria in my lungs because of it. That it is extremely hard to kill with antibiotics. I am supposed to enter into an inhaled antibiotic trial for this bacteria in a couple of months. I keep getting told that this bacteria is pretty bad.

Can anyone please tell me what kinds of things that this bacteria can do to the cf patients lungs? I honestly do not know much else about it. I welcome anyone's advise and knowledge of this.

Thanks!

Mary 28 w/cf
 
S

Sweetness81

New member
I just got out of the hospital a couple weeks ago, and my cf team told me that I have B. Cepacia. They explained that I grow staph bacteria in my lungs because of it. That it is extremely hard to kill with antibiotics. I am supposed to enter into an inhaled antibiotic trial for this bacteria in a couple of months. I keep getting told that this bacteria is pretty bad.
<br />
<br />Can anyone please tell me what kinds of things that this bacteria can do to the cf patients lungs? I honestly do not know much else about it. I welcome anyone's advise and knowledge of this.
<br />
<br />Thanks!
<br />
<br />Mary 28 w/cf
 
R

rubyroselee

New member
Hi Mary,

I know a lot of people on here have B.cepacia, so I'm sure they can give you better advice than I can. But I do believe there are three things that B.cepacia can do and there's a 1/3 chance for any of them to occur. You could have basically no adverse affects other than what a normal staph infection would do, which is just damage to lungs at the normal rate...or there could be a little faster progression...or 'cepacia syndrome', which is a rapid progression. And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.

But keep in mind that a lot of people have B.cepacia and have had it for many years and are doing fine with it. That is GREAT news that they have a clinical trial for a medication for it, so hopefully you will be able to participate in that. That's really what we need is a good B.cepacia drug out there!

Take care

I'm sure someone else will have better advice for you who has dealt with B.cepacia before.
 
R

rubyroselee

New member
Hi Mary,

I know a lot of people on here have B.cepacia, so I'm sure they can give you better advice than I can. But I do believe there are three things that B.cepacia can do and there's a 1/3 chance for any of them to occur. You could have basically no adverse affects other than what a normal staph infection would do, which is just damage to lungs at the normal rate...or there could be a little faster progression...or 'cepacia syndrome', which is a rapid progression. And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.

But keep in mind that a lot of people have B.cepacia and have had it for many years and are doing fine with it. That is GREAT news that they have a clinical trial for a medication for it, so hopefully you will be able to participate in that. That's really what we need is a good B.cepacia drug out there!

Take care

I'm sure someone else will have better advice for you who has dealt with B.cepacia before.
 
R

rubyroselee

New member
Hi Mary,

I know a lot of people on here have B.cepacia, so I'm sure they can give you better advice than I can. But I do believe there are three things that B.cepacia can do and there's a 1/3 chance for any of them to occur. You could have basically no adverse affects other than what a normal staph infection would do, which is just damage to lungs at the normal rate...or there could be a little faster progression...or 'cepacia syndrome', which is a rapid progression. And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.

But keep in mind that a lot of people have B.cepacia and have had it for many years and are doing fine with it. That is GREAT news that they have a clinical trial for a medication for it, so hopefully you will be able to participate in that. That's really what we need is a good B.cepacia drug out there!

Take care

I'm sure someone else will have better advice for you who has dealt with B.cepacia before.
 
R

rubyroselee

New member
Hi Mary,

I know a lot of people on here have B.cepacia, so I'm sure they can give you better advice than I can. But I do believe there are three things that B.cepacia can do and there's a 1/3 chance for any of them to occur. You could have basically no adverse affects other than what a normal staph infection would do, which is just damage to lungs at the normal rate...or there could be a little faster progression...or 'cepacia syndrome', which is a rapid progression. And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.

But keep in mind that a lot of people have B.cepacia and have had it for many years and are doing fine with it. That is GREAT news that they have a clinical trial for a medication for it, so hopefully you will be able to participate in that. That's really what we need is a good B.cepacia drug out there!

Take care

I'm sure someone else will have better advice for you who has dealt with B.cepacia before.
 
R

rubyroselee

New member
Hi Mary,
<br />
<br />I know a lot of people on here have B.cepacia, so I'm sure they can give you better advice than I can. But I do believe there are three things that B.cepacia can do and there's a 1/3 chance for any of them to occur. You could have basically no adverse affects other than what a normal staph infection would do, which is just damage to lungs at the normal rate...or there could be a little faster progression...or 'cepacia syndrome', which is a rapid progression. And I have heard stories of people who have gotten rid of it too and haven't cultured it for many years after culturing it.
<br />
<br />But keep in mind that a lot of people have B.cepacia and have had it for many years and are doing fine with it. That is GREAT news that they have a clinical trial for a medication for it, so hopefully you will be able to participate in that. That's really what we need is a good B.cepacia drug out there!
<br />
<br />Take care
<br />
<br />I'm sure someone else will have better advice for you who has dealt with B.cepacia before.
 
M

momtoCory

New member
One of the first they have to do with Cepacia is to find out what strain you have. Different strain act differently and different strains are harder to treat.

B. Cepacia can be very difficult to treat, yes. I will not fabricate anything. It is a nasty but that needs to be taken seriously.

It is important that you stay on top of all of your treatments and respond quickly when you feel infection coming on. The goal is not give the Cepacia an upper hand

Cepacia is ofter treated with several different antibiotics at one time because of its strength.

Be stern in making sure that all hospital staff mask, gown and glove when caring for you. Not only do you not want to spread the Cepacia to other but you do not want to pick up and deal with any other germs and bacteria either.

My son lived with Cepacia for 6 years and he had one of the strongest and hardest to deal with strains.

Stay positive
 
M

momtoCory

New member
One of the first they have to do with Cepacia is to find out what strain you have. Different strain act differently and different strains are harder to treat.

B. Cepacia can be very difficult to treat, yes. I will not fabricate anything. It is a nasty but that needs to be taken seriously.

It is important that you stay on top of all of your treatments and respond quickly when you feel infection coming on. The goal is not give the Cepacia an upper hand

Cepacia is ofter treated with several different antibiotics at one time because of its strength.

Be stern in making sure that all hospital staff mask, gown and glove when caring for you. Not only do you not want to spread the Cepacia to other but you do not want to pick up and deal with any other germs and bacteria either.

My son lived with Cepacia for 6 years and he had one of the strongest and hardest to deal with strains.

Stay positive
 
M

momtoCory

New member
One of the first they have to do with Cepacia is to find out what strain you have. Different strain act differently and different strains are harder to treat.

B. Cepacia can be very difficult to treat, yes. I will not fabricate anything. It is a nasty but that needs to be taken seriously.

It is important that you stay on top of all of your treatments and respond quickly when you feel infection coming on. The goal is not give the Cepacia an upper hand

Cepacia is ofter treated with several different antibiotics at one time because of its strength.

Be stern in making sure that all hospital staff mask, gown and glove when caring for you. Not only do you not want to spread the Cepacia to other but you do not want to pick up and deal with any other germs and bacteria either.

My son lived with Cepacia for 6 years and he had one of the strongest and hardest to deal with strains.

Stay positive
 
M

momtoCory

New member
One of the first they have to do with Cepacia is to find out what strain you have. Different strain act differently and different strains are harder to treat.

B. Cepacia can be very difficult to treat, yes. I will not fabricate anything. It is a nasty but that needs to be taken seriously.

It is important that you stay on top of all of your treatments and respond quickly when you feel infection coming on. The goal is not give the Cepacia an upper hand

Cepacia is ofter treated with several different antibiotics at one time because of its strength.

Be stern in making sure that all hospital staff mask, gown and glove when caring for you. Not only do you not want to spread the Cepacia to other but you do not want to pick up and deal with any other germs and bacteria either.

My son lived with Cepacia for 6 years and he had one of the strongest and hardest to deal with strains.

Stay positive
 
M

momtoCory

New member
One of the first they have to do with Cepacia is to find out what strain you have. Different strain act differently and different strains are harder to treat.
<br />
<br />B. Cepacia can be very difficult to treat, yes. I will not fabricate anything. It is a nasty but that needs to be taken seriously.
<br />
<br />It is important that you stay on top of all of your treatments and respond quickly when you feel infection coming on. The goal is not give the Cepacia an upper hand
<br />
<br />Cepacia is ofter treated with several different antibiotics at one time because of its strength.
<br />
<br />Be stern in making sure that all hospital staff mask, gown and glove when caring for you. Not only do you not want to spread the Cepacia to other but you do not want to pick up and deal with any other germs and bacteria either.
<br />
<br />My son lived with Cepacia for 6 years and he had one of the strongest and hardest to deal with strains.
<br />
<br />Stay positive
 
M

moxie1

Guest
Hi,

Like the others said, you might want to learn what strain you have, although I have had cepacia for 15 years and just learned in the last 2 years what strain it was.

I have cenocepacia, which is the worst strain and most associated with "cepacia syndrome". However, each person is individual with how their body will treat the cepacia. Like I said, I've had it for over 15 years and my FEV1 is still high 60's-low 70's and I am 34. By the grace of God, it has not had any effect on me, and has most likely protected me from other CF bugs.

Try not to stress about it too much. Just arm yourself with whatever knowledge you can, and remind yourself that just because someone else got really sick with it, doesn't mean that you will too.
 
M

moxie1

Guest
Hi,

Like the others said, you might want to learn what strain you have, although I have had cepacia for 15 years and just learned in the last 2 years what strain it was.

I have cenocepacia, which is the worst strain and most associated with "cepacia syndrome". However, each person is individual with how their body will treat the cepacia. Like I said, I've had it for over 15 years and my FEV1 is still high 60's-low 70's and I am 34. By the grace of God, it has not had any effect on me, and has most likely protected me from other CF bugs.

Try not to stress about it too much. Just arm yourself with whatever knowledge you can, and remind yourself that just because someone else got really sick with it, doesn't mean that you will too.
 
M

moxie1

Guest
Hi,

Like the others said, you might want to learn what strain you have, although I have had cepacia for 15 years and just learned in the last 2 years what strain it was.

I have cenocepacia, which is the worst strain and most associated with "cepacia syndrome". However, each person is individual with how their body will treat the cepacia. Like I said, I've had it for over 15 years and my FEV1 is still high 60's-low 70's and I am 34. By the grace of God, it has not had any effect on me, and has most likely protected me from other CF bugs.

Try not to stress about it too much. Just arm yourself with whatever knowledge you can, and remind yourself that just because someone else got really sick with it, doesn't mean that you will too.
 
M

moxie1

Guest
Hi,

Like the others said, you might want to learn what strain you have, although I have had cepacia for 15 years and just learned in the last 2 years what strain it was.

I have cenocepacia, which is the worst strain and most associated with "cepacia syndrome". However, each person is individual with how their body will treat the cepacia. Like I said, I've had it for over 15 years and my FEV1 is still high 60's-low 70's and I am 34. By the grace of God, it has not had any effect on me, and has most likely protected me from other CF bugs.

Try not to stress about it too much. Just arm yourself with whatever knowledge you can, and remind yourself that just because someone else got really sick with it, doesn't mean that you will too.
 
M

moxie1

Guest
Hi,
<br />
<br />Like the others said, you might want to learn what strain you have, although I have had cepacia for 15 years and just learned in the last 2 years what strain it was.
<br />
<br />I have cenocepacia, which is the worst strain and most associated with "cepacia syndrome". However, each person is individual with how their body will treat the cepacia. Like I said, I've had it for over 15 years and my FEV1 is still high 60's-low 70's and I am 34. By the grace of God, it has not had any effect on me, and has most likely protected me from other CF bugs.
<br />
<br />Try not to stress about it too much. Just arm yourself with whatever knowledge you can, and remind yourself that just because someone else got really sick with it, doesn't mean that you will too.
 
You must log in or register to reply here.
Top