Burkholderia cepacia

[Claudia]

Hi everybody,

Thanks for your reactions! I caught BC about 10 years ago. Here in Holland the people which are infected with BC may not met eachother in hospitals and special cf congresses. There is a special segregation policy and appointments in the hospitals.

 

[HairGirl]

I also have B. Cepacia, have had it since I was about 8. Same rule applies here, I'm on a totally different floor when I am in the hospital and have to be the last appoint. or on a totally different day for check-ups than other cf people.

 

[HairGirl]

I also have B. Cepacia, have had it since I was about 8. Same rule applies here, I'm on a totally different floor when I am in the hospital and have to be the last appoint. or on a totally different day for check-ups than other cf people.

 

[HairGirl]

I also have B. Cepacia, have had it since I was about 8. Same rule applies here, I'm on a totally different floor when I am in the hospital and have to be the last appoint. or on a totally different day for check-ups than other cf people.

 

[Marjolein]

The same rule that is applied for BC patients is now in place for Pseudo overhere too. At my old CF clinic we had an hour between every CFer, so there was little chance we would bump into eachother. And at the ward you couldn't go out of your room when another CFer was.

 

[Marjolein]

The same rule that is applied for BC patients is now in place for Pseudo overhere too. At my old CF clinic we had an hour between every CFer, so there was little chance we would bump into eachother. And at the ward you couldn't go out of your room when another CFer was.

 

[Marjolein]

The same rule that is applied for BC patients is now in place for Pseudo overhere too. At my old CF clinic we had an hour between every CFer, so there was little chance we would bump into eachother. And at the ward you couldn't go out of your room when another CFer was.

 

[fourkidsmom]

Claudia:

Hi. My son cultured the worst strain of Cepecia at 4 yrs old. He is now 5. I know he is very young to have it. It sucks. I would think that it would be higher than 3%, but I really don't know.

Fourkidsmom

Step-Mom to 14 yr old girl no cf
Mom to 13 yr old boy- cf carrier
Mom to 5 yr old boy with cf
Mom to 4 yr old girl no cf, but chromosome 9q 21.2 q 22.1 deletion

 

[fourkidsmom]

Claudia:

Hi. My son cultured the worst strain of Cepecia at 4 yrs old. He is now 5. I know he is very young to have it. It sucks. I would think that it would be higher than 3%, but I really don't know.

Fourkidsmom

Step-Mom to 14 yr old girl no cf
Mom to 13 yr old boy- cf carrier
Mom to 5 yr old boy with cf
Mom to 4 yr old girl no cf, but chromosome 9q 21.2 q 22.1 deletion

 

[fourkidsmom]

Claudia:

Hi. My son cultured the worst strain of Cepecia at 4 yrs old. He is now 5. I know he is very young to have it. It sucks. I would think that it would be higher than 3%, but I really don't know.

Fourkidsmom

Step-Mom to 14 yr old girl no cf
Mom to 13 yr old boy- cf carrier
Mom to 5 yr old boy with cf
Mom to 4 yr old girl no cf, but chromosome 9q 21.2 q 22.1 deletion

 

[Mandi1404]

I dont have it...but I always heard it was really bad to get it. How is it any different then say...MRSA? Are you still able to get a transplant?

 

[Mandi1404]

I dont have it...but I always heard it was really bad to get it. How is it any different then say...MRSA? Are you still able to get a transplant?

 

[Mandi1404]

I dont have it...but I always heard it was really bad to get it. How is it any different then say...MRSA? Are you still able to get a transplant?

 

[Marjolein]

Hi Mandi
I think Cepacia is said to be very bad cause it can be very difficult to treat.
You can have a transplant at some centers when you are infected with it, at others you can't. Because there is a risk the cepacia could get into your blood when removing the lungs (someone correct me if i wrong!) and that is very very difficult to treat.

 

[Marjolein]

Hi Mandi
I think Cepacia is said to be very bad cause it can be very difficult to treat.
You can have a transplant at some centers when you are infected with it, at others you can't. Because there is a risk the cepacia could get into your blood when removing the lungs (someone correct me if i wrong!) and that is very very difficult to treat.

 

[Marjolein]

Hi Mandi
I think Cepacia is said to be very bad cause it can be very difficult to treat.
You can have a transplant at some centers when you are infected with it, at others you can't. Because there is a risk the cepacia could get into your blood when removing the lungs (someone correct me if i wrong!) and that is very very difficult to treat.

 

[JustDucky]

Yeah, definitely a hard bug to treat due to its inate resistance to many drugs. Some CF centers do transplant those with B. cepacia, but they have a lower success rate according to my CF doc. As others have said, the bug can get into the blood stream (called cepacia syndrome) and cause sepsis. There are at least 9 types of B. cepacia, genomovars. Most Cf'ers get type II or III. I have type IV. Each type has their own characteristics. I too am segregrated when I go to appts. and am on a totally different floor when I am admitted as well. There aren't alot of cepacia patients in the CF center where I go to and they like it that way, so that's why they are so strict with isolation. (Should be like that everywhere....I think most CF centers have a protocol with Cepacia) Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Yeah, definitely a hard bug to treat due to its inate resistance to many drugs. Some CF centers do transplant those with B. cepacia, but they have a lower success rate according to my CF doc. As others have said, the bug can get into the blood stream (called cepacia syndrome) and cause sepsis. There are at least 9 types of B. cepacia, genomovars. Most Cf'ers get type II or III. I have type IV. Each type has their own characteristics. I too am segregrated when I go to appts. and am on a totally different floor when I am admitted as well. There aren't alot of cepacia patients in the CF center where I go to and they like it that way, so that's why they are so strict with isolation. (Should be like that everywhere....I think most CF centers have a protocol with Cepacia) Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Yeah, definitely a hard bug to treat due to its inate resistance to many drugs. Some CF centers do transplant those with B. cepacia, but they have a lower success rate according to my CF doc. As others have said, the bug can get into the blood stream (called cepacia syndrome) and cause sepsis. There are at least 9 types of B. cepacia, genomovars. Most Cf'ers get type II or III. I have type IV. Each type has their own characteristics. I too am segregrated when I go to appts. and am on a totally different floor when I am admitted as well. There aren't alot of cepacia patients in the CF center where I go to and they like it that way, so that's why they are so strict with isolation. (Should be like that everywhere....I think most CF centers have a protocol with Cepacia) Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[HairGirl]

Just wanted to say it is true that people with Cepacia can get a lung transplant but at only a few centers, also that yes the 'success' rate is much lower, just 1-3 years.