Question for those with Burkholderia Cepacia

[Alyssa]

I've been doing some reading (see links below) but my primary question is:

<b>Do you know for sure (or have a good hunch) how, when and where your got it from? Do you feel it was:</b>

1) close contact from another person (same camp or hospital room)
2) contact with a contaminated surface (office visit at clinic) or equipment at clinic
3) the environment - your kitchen sink, your garden..... whatever
4) something else I haven't listed???

From what I've read, yes it is in the environment and there have been some documented cases of people who must have gotten it from the environment, <b>but by and large they feel most people have gotten it in the hospital, clinics or camps. Do you feel this is consistent with your experiences?</b>

<a target=_blank class=ftalternatingbarlinklarge href="http://users.ugent.be/~tcoenye/q&a.PDF
">http://users.ugent.be/~tcoenye/q&a.PDF
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.mediaprosf.com/cffwebcast/germs/faqs.htm">http://www.mediaprosf.com/cffwebcast/germs/faqs.htm</a> (question 50)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
">http://www.cysticfibrosismedic...s/CFText/bcepacia.htm
</a>
Thanks for the information!

 

[Alyssa]

I've been doing some reading (see links below) but my primary question is:

<b>Do you know for sure (or have a good hunch) how, when and where your got it from? Do you feel it was:</b>

1) close contact from another person (same camp or hospital room)
2) contact with a contaminated surface (office visit at clinic) or equipment at clinic
3) the environment - your kitchen sink, your garden..... whatever
4) something else I haven't listed???

From what I've read, yes it is in the environment and there have been some documented cases of people who must have gotten it from the environment, <b>but by and large they feel most people have gotten it in the hospital, clinics or camps. Do you feel this is consistent with your experiences?</b>

<a target=_blank class=ftalternatingbarlinklarge href="http://users.ugent.be/~tcoenye/q&a.PDF
">http://users.ugent.be/~tcoenye/q&a.PDF
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.mediaprosf.com/cffwebcast/germs/faqs.htm">http://www.mediaprosf.com/cffwebcast/germs/faqs.htm</a> (question 50)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
">http://www.cysticfibrosismedic...s/CFText/bcepacia.htm
</a>
Thanks for the information!

 

[Alyssa]

I've been doing some reading (see links below) but my primary question is:

<b>Do you know for sure (or have a good hunch) how, when and where your got it from? Do you feel it was:</b>

1) close contact from another person (same camp or hospital room)
2) contact with a contaminated surface (office visit at clinic) or equipment at clinic
3) the environment - your kitchen sink, your garden..... whatever
4) something else I haven't listed???

From what I've read, yes it is in the environment and there have been some documented cases of people who must have gotten it from the environment, <b>but by and large they feel most people have gotten it in the hospital, clinics or camps. Do you feel this is consistent with your experiences?</b>

<a target=_blank class=ftalternatingbarlinklarge href="http://users.ugent.be/~tcoenye/q&a.PDF
">http://users.ugent.be/~tcoenye/q&a.PDF
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.mediaprosf.com/cffwebcast/germs/faqs.htm">http://www.mediaprosf.com/cffwebcast/germs/faqs.htm</a> (question 50)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/bcepacia.htm
">http://www.cysticfibrosismedic...s/CFText/bcepacia.htm
</a>
Thanks for the information!

 

[momtoCory]

We do not know where my son picked up Cepacia. If I were to "assume" I would say from another person with CF. We lived in a very small town. There was 1 high school (my daughters graduating class was 36). There was another boy, the same age as my son, that attended the school. It wasn't until after my son cultered CF, that we learned that he was not taken care. He had not seen a doctor in years, did not take his prescribed medication. It wasn't until after my cultered Cepacia that he had become very sick and was taken to the hospital and he also cultured Cepacia.
I often get on the "Cepacia soapbox" because I do believe that another person with CF contracted Cepacia from my son in the hospital setting. We had not yet known that Cory had Cepacia as the test was not back yet. About a month after Cory's cultured it for the first time, this other young man cultured it also. This was before the strict regulations in the hospital setting. These two roomed right next to each other, use to go to the teen room together (with Mask on), would share nurses and therapist.
Michelle, mom to Cory age 20

 

[momtoCory]

We do not know where my son picked up Cepacia. If I were to "assume" I would say from another person with CF. We lived in a very small town. There was 1 high school (my daughters graduating class was 36). There was another boy, the same age as my son, that attended the school. It wasn't until after my son cultered CF, that we learned that he was not taken care. He had not seen a doctor in years, did not take his prescribed medication. It wasn't until after my cultered Cepacia that he had become very sick and was taken to the hospital and he also cultured Cepacia.
I often get on the "Cepacia soapbox" because I do believe that another person with CF contracted Cepacia from my son in the hospital setting. We had not yet known that Cory had Cepacia as the test was not back yet. About a month after Cory's cultured it for the first time, this other young man cultured it also. This was before the strict regulations in the hospital setting. These two roomed right next to each other, use to go to the teen room together (with Mask on), would share nurses and therapist.
Michelle, mom to Cory age 20

 

[momtoCory]

We do not know where my son picked up Cepacia. If I were to "assume" I would say from another person with CF. We lived in a very small town. There was 1 high school (my daughters graduating class was 36). There was another boy, the same age as my son, that attended the school. It wasn't until after my son cultered CF, that we learned that he was not taken care. He had not seen a doctor in years, did not take his prescribed medication. It wasn't until after my cultered Cepacia that he had become very sick and was taken to the hospital and he also cultured Cepacia.
I often get on the "Cepacia soapbox" because I do believe that another person with CF contracted Cepacia from my son in the hospital setting. We had not yet known that Cory had Cepacia as the test was not back yet. About a month after Cory's cultured it for the first time, this other young man cultured it also. This was before the strict regulations in the hospital setting. These two roomed right next to each other, use to go to the teen room together (with Mask on), would share nurses and therapist.
Michelle, mom to Cory age 20

 

[Scarlett81]

The first time I tested for it, I was 12 or 13. But I don't know if I had had it prior to that age and they just hadn't tested me for it, or if I just got it at that age. I grew up in the days of putting 10 kids with cf in one room. And as a pre teen I remember trying to hide from the nurses and sneek down to the cafeteria in the middle of the night with all my cf buddies. So yeah, I got it from the hospital for sure.
But I'm doing well b/c I haven't had a cepacia flare up in at least 3 years. To me, it really doesn't matter too much where I got it or when. I got it, I just have to deal with it. But I've been luckier than others.

 

[Scarlett81]

The first time I tested for it, I was 12 or 13. But I don't know if I had had it prior to that age and they just hadn't tested me for it, or if I just got it at that age. I grew up in the days of putting 10 kids with cf in one room. And as a pre teen I remember trying to hide from the nurses and sneek down to the cafeteria in the middle of the night with all my cf buddies. So yeah, I got it from the hospital for sure.
But I'm doing well b/c I haven't had a cepacia flare up in at least 3 years. To me, it really doesn't matter too much where I got it or when. I got it, I just have to deal with it. But I've been luckier than others.

 

[Scarlett81]

The first time I tested for it, I was 12 or 13. But I don't know if I had had it prior to that age and they just hadn't tested me for it, or if I just got it at that age. I grew up in the days of putting 10 kids with cf in one room. And as a pre teen I remember trying to hide from the nurses and sneek down to the cafeteria in the middle of the night with all my cf buddies. So yeah, I got it from the hospital for sure.
But I'm doing well b/c I haven't had a cepacia flare up in at least 3 years. To me, it really doesn't matter too much where I got it or when. I got it, I just have to deal with it. But I've been luckier than others.

 

[tammykrumrey]

My nephew started culturing cepacia when he was nine years old. We have no idea where it came from. Our best guess is the environment. He had no contact with anyone else with CF, ever, besides my daughters, and neither one of my girls have ever cultured it. He and my daughters have no contact now since he started culturing it, and boy was I scared since the kids were all together the day before he had gotten his culture results back (that is literally the last day they were even close to one another). That has been six years now.

My sister and her husband lived on what used to be old farm land on about 6 acres. As I already said, we are guessing the environment. According to his CF doctor, there were only three known cases of cepacia in our clinic at the time of his first time culturing it, and none of the three had the same strain.

 

[tammykrumrey]

My nephew started culturing cepacia when he was nine years old. We have no idea where it came from. Our best guess is the environment. He had no contact with anyone else with CF, ever, besides my daughters, and neither one of my girls have ever cultured it. He and my daughters have no contact now since he started culturing it, and boy was I scared since the kids were all together the day before he had gotten his culture results back (that is literally the last day they were even close to one another). That has been six years now.

My sister and her husband lived on what used to be old farm land on about 6 acres. As I already said, we are guessing the environment. According to his CF doctor, there were only three known cases of cepacia in our clinic at the time of his first time culturing it, and none of the three had the same strain.

 

[tammykrumrey]

My nephew started culturing cepacia when he was nine years old. We have no idea where it came from. Our best guess is the environment. He had no contact with anyone else with CF, ever, besides my daughters, and neither one of my girls have ever cultured it. He and my daughters have no contact now since he started culturing it, and boy was I scared since the kids were all together the day before he had gotten his culture results back (that is literally the last day they were even close to one another). That has been six years now.

My sister and her husband lived on what used to be old farm land on about 6 acres. As I already said, we are guessing the environment. According to his CF doctor, there were only three known cases of cepacia in our clinic at the time of his first time culturing it, and none of the three had the same strain.

 

[HairGirl]

I've had B. cepacia since I was 8 or nine, I'm guessing it was from a cf camp, I have an older brother who went to camp also so we don't know who got it first but all three of us kids have/had the same strain.

Just remember, healthy people can have cepacia too. Like my husband probably has it but it doesn't affect him because he doesn't have a compromised immune system.

 

[HairGirl]

I've had B. cepacia since I was 8 or nine, I'm guessing it was from a cf camp, I have an older brother who went to camp also so we don't know who got it first but all three of us kids have/had the same strain.

Just remember, healthy people can have cepacia too. Like my husband probably has it but it doesn't affect him because he doesn't have a compromised immune system.

 

[HairGirl]

I've had B. cepacia since I was 8 or nine, I'm guessing it was from a cf camp, I have an older brother who went to camp also so we don't know who got it first but all three of us kids have/had the same strain.

Just remember, healthy people can have cepacia too. Like my husband probably has it but it doesn't affect him because he doesn't have a compromised immune system.

 

[Diane]

I am pretty darned sure i got mine from being in the hospital....I'll tell you the story and you decide if i am right, ok? I was 31 and had to have sinus surgery. It would be the first time in the hospital in many many years. I had 100% lung function and no contact with any other cf patients. I went into the hospital for my surgery feeling pretty good and the day after the surgery started feeling like crap and the feeling never went away. I started having unbelievable lethargy. A few months daily after the surgery i started running low grade fevers ( 99.2 ) every day around the same time. The the constant cough started ( which i never had before). Then the infections that never seemed to want to go away. I kept telling my doctors something was wrong time and time again, but nothing seemed to be obvious. I had never even heard of Cepacia before so i had no idea to ask for a sputum sample for it. My doctor did however request a sputum sample and a few weeks later at my next appt. i was told i had b.cepacia. I wasnt thrilled, because i had no idea that something like this could happen if i went in the hospital ( shows how naive i was about cf at the time). Sounds like i got it in the hospital huh?

 

[Diane]

I am pretty darned sure i got mine from being in the hospital....I'll tell you the story and you decide if i am right, ok? I was 31 and had to have sinus surgery. It would be the first time in the hospital in many many years. I had 100% lung function and no contact with any other cf patients. I went into the hospital for my surgery feeling pretty good and the day after the surgery started feeling like crap and the feeling never went away. I started having unbelievable lethargy. A few months daily after the surgery i started running low grade fevers ( 99.2 ) every day around the same time. The the constant cough started ( which i never had before). Then the infections that never seemed to want to go away. I kept telling my doctors something was wrong time and time again, but nothing seemed to be obvious. I had never even heard of Cepacia before so i had no idea to ask for a sputum sample for it. My doctor did however request a sputum sample and a few weeks later at my next appt. i was told i had b.cepacia. I wasnt thrilled, because i had no idea that something like this could happen if i went in the hospital ( shows how naive i was about cf at the time). Sounds like i got it in the hospital huh?

 

[Diane]

I am pretty darned sure i got mine from being in the hospital....I'll tell you the story and you decide if i am right, ok? I was 31 and had to have sinus surgery. It would be the first time in the hospital in many many years. I had 100% lung function and no contact with any other cf patients. I went into the hospital for my surgery feeling pretty good and the day after the surgery started feeling like crap and the feeling never went away. I started having unbelievable lethargy. A few months daily after the surgery i started running low grade fevers ( 99.2 ) every day around the same time. The the constant cough started ( which i never had before). Then the infections that never seemed to want to go away. I kept telling my doctors something was wrong time and time again, but nothing seemed to be obvious. I had never even heard of Cepacia before so i had no idea to ask for a sputum sample for it. My doctor did however request a sputum sample and a few weeks later at my next appt. i was told i had b.cepacia. I wasnt thrilled, because i had no idea that something like this could happen if i went in the hospital ( shows how naive i was about cf at the time). Sounds like i got it in the hospital huh?

 

[Allie]

Ry got it from the environment, I know this for certain. Ry didn't go to a CF clinic, and he was the only CF patient at his pulmonologist's. And all the CFers that live in the area, only one cultured cepacia at all, and it was a different genomovar from Ry. Ry's genomovar was also consistent with what's used on the wheat farms, which is grown around here.

 

[Allie]

Ry got it from the environment, I know this for certain. Ry didn't go to a CF clinic, and he was the only CF patient at his pulmonologist's. And all the CFers that live in the area, only one cultured cepacia at all, and it was a different genomovar from Ry. Ry's genomovar was also consistent with what's used on the wheat farms, which is grown around here.