I am 18 yrs old and only grow pseudomonas i was wondering how you catch cepacia and if anyone has any information about it i would love to hear from you. As in the different effects of it from pseudomonas. Is it worse than pseudomonas? Does it only occur in older CF patients? etc thanks
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
How do you get Cepacia?
- Thread starter anonymous
- Start date
Emily65Roses
New member
I am not sure, so don't take my word for it... but I believe cepacia is generally worse than auriginosa (sp). And I seem to remember hearing that one of the places it likes to grow is in rotten onions. But again... not sure.
We are fairly sure my husband contracted b. cepacia while he was in the hospital. We let some things slide (respiratory shared a common bottle/dropper for the nebs, didn't say anything if nurses didn't wash their hands, etc.) that now we wish we would have been much more adamant - now we don't care if they act like we are making a big deal if we ask them to do something we feel would protect him. He also got a port put in and the home nurses taught me how to access it, so hopefully further exposure to germs from the hospital will be minimal. We do anything to keep him out of the hospital.
Although cepacia exists in our environment, the most probable transmission is from another infected CF'er. There are several strains, one particularly virulent, which my husband has. It is a pretty smart bug, and no one antibiotic is effective. Sometimes patients don't see any adverse effect, some experience a slower downward slide to their health (my husband) and some see the serious negative effects immediately. Only about 5% of CF'ers have it, so we often think my husband is sort of the trial and error guy.
Glad you don't have it! Good health to you and Merry Christmas.
Although cepacia exists in our environment, the most probable transmission is from another infected CF'er. There are several strains, one particularly virulent, which my husband has. It is a pretty smart bug, and no one antibiotic is effective. Sometimes patients don't see any adverse effect, some experience a slower downward slide to their health (my husband) and some see the serious negative effects immediately. Only about 5% of CF'ers have it, so we often think my husband is sort of the trial and error guy.
Glad you don't have it! Good health to you and Merry Christmas.
Joblazer86
New member
You usually get this bug primarily through contact with another CF patient who has it or in the hospital. There are 9 different types and some are worse than others. If you have a combination of pseudo and cepacia it is always worse than one but depending on which type it differs. Cepacia is a lot harder to fight b/c it is always mulit-resistent to medications. It can also effect you if you need a lung transplant b/c some hospitals will not perform the procedure if you have b.cepacia. The reason is that people that have it have a lower rate of survival after the procedure but with new drugs that percentage is getting much better. It is found in the environment like emily had stated in rotten onions,but some research has found that environmental is different from the human type. There is not enough research to support that so avoid those rotten onions and wash your veggies and fruit before eating. Hope that helps.
I have b. cepacia and am sure I caught it in the hospital, as I am never around other CF people and, like Joseph said, most research suggests that although cepacia exists in the environment, it is not the type to infect you. In fact, it can exist in many places. Who knows really where I got it. My mother was always SUPER paranoid at the hospital when I was younger, insisting that they change the PFT tube back in the 80's when (gross!) one CF person would go right after the other on the machine, just breathing through the same plastic tube with only the mouthpiece being changed. Its terrible that so many people had to get sick for them to finally wise up and make some changes. Unfortunately, paranoia and all, I still caught cepacia. My mother used to clean the whole room before i was admitted just to be safe. The best thing you can do is not have contact with other cf patients (even if you think they dont have it, they may not have cultured it yet but may have it still), and to insist on ultra-cleanliness at the hospital.
It is rare, I think Diane and I are the only ones on this board who have it other than that other woman's husband.
Also the thing about cepacia is if you have Pseudamonas (which I also do) it tends to at times knock the PA out of the picture. A few times I have cultured only b. cepacia and not pseudamonas. If you are lucky you can eradicate it for a time, hopefully forever!
I am finishing up a cleanout right now of IV Tobra, IV Meropenem, Oral Bactrim and Oral Zithromax. You usually need 3-4 drugs to treat it, and your cultures have to be sent to 'synergy' labs to find out which combinations work for you.
Fun stuff!
Caitlin 21
It is rare, I think Diane and I are the only ones on this board who have it other than that other woman's husband.
Also the thing about cepacia is if you have Pseudamonas (which I also do) it tends to at times knock the PA out of the picture. A few times I have cultured only b. cepacia and not pseudamonas. If you are lucky you can eradicate it for a time, hopefully forever!
I am finishing up a cleanout right now of IV Tobra, IV Meropenem, Oral Bactrim and Oral Zithromax. You usually need 3-4 drugs to treat it, and your cultures have to be sent to 'synergy' labs to find out which combinations work for you.
Fun stuff!
Caitlin 21
here in Texas about ten years ago there was a camp for kids with different illnesses, such as cancer, asthma, etc.... They had a new group each week or so during the summer. There was a CF group that went each year but they had to stop letting the kids come because of the risk of Cepacia spreading to one another. I went for a week with the Crohns disease group--it was amazing a wonderful to be around others with the same disease, so it was pretty upsetting that CF kids can't go anymore. I'm pretty relaxed about letting my son be around other kids at school,etc I think its good for him and his immunity but I won't let him be arounf other Cepacia kids. I feel sick in my stomach that we have to single out the kids with cepacia, but I don't want my son to get it--he has never had pseudo either. To the ones who do have Cepacia, how does it make you feel to be singled out, are you shunned by others? I hope to God that you don't think bad of those who keep their CF loved ones away--I am an extremely non-prejudiced person and this kills me to know that I am keeping my son away from you.
<img src="i/expressions/rose.gif" border="0"> The 'Cepacia' issue crops up alot.....I am an older CF sufferer {50+} and contacted Burkholderia Cepacia after attending an Adult Conference 5yrs. ago. {did not have contact with other CF adults prior} A week later I landed up in hospital with a particularly bad chest infection, firstly the Doctor told me I had a growth of P/Aurogenosia {sp?}then because B/C takes longer to culture and mistakes can be made by Microbiologists, 2days later was told infact I have an additional bacteria on my old lungs, a rather nasty one, C/P which will be a permanent resident, can not be erradicated.... I was once a mild sufferer but now I have slowed up a little, when I manage to get a infection I can taste that ' nasty' in my mouth and reach for a sec. antibiotic, which usually takes a few weeks to clear up. I do not go into hospital for IV. treatment unless I find it necessary, unfortunately higiene standards can vary within the Med. profession, and along with other bugs C/P can lurk within hosp. walls!!
There is new evidence that other infections can be cross- infected via contact within the CF community, so its not just ' us' that you should be keeping your children away from.................
Fortunately modern technology doesn't alow us to feel too much like a leper...........
Cheers.
There is new evidence that other infections can be cross- infected via contact within the CF community, so its not just ' us' that you should be keeping your children away from.................
Fortunately modern technology doesn't alow us to feel too much like a leper...........
Cheers.
I certainly dont feel "shunned" by others. I dont have contact with or know any other CFers really, so its not an issue. In the hospital the doctors have to wear gowns and gloves with cepacia patients, but frankly I think they should have to with all CF patients. Its like they wait for people to get it and THEN they wise up. There are other things that can be contracted...pseudamonas, MRSA, and other not-so-virulent bugs. Why shouldnt these hygeine standards apply to all CF patients. I actually dont mind it because in the hospital I am guaranteed my own room, my own fridge, and everyone has to be super-clean around me. Sounds fine to me!
Caitlin 21 w/ CF
Caitlin 21 w/ CF
Magerly111
New member
I don't have cepacia, but I just read the last comment made about it. I agree with having the doctors and nurses wear gowns and gloves with all CF patients and actually, at my hospital, CHOP in PA, that is soemthing that is required. All CF patients have their own rooms, and are actually not allowed to leave, unless it is for tests, PFTs, going out of the entire hospital, and such things like that. Although it was boring, I felt more safe from getting any other germs. Everyone had to wear a gown and gloves when they entered my room, except my family and bf. Even the people who delivered the meals, and cleaned the rooms had to do that. CF patients w/ cepacia I think are on a different floor when they are hospitalized, and when I go just for monthly check-ups, I have to wear a mask, and cepacia patients are only taken on certain days so I would not have any contact with them. CF patients actually shouldn't have much contact with each other because each one of us has our own different "germs," regardless if you have cepacia or not. I mean, siblings are a diferent story, simply because you grow up with them, and are probably more "immune" to their germs than someone that you've never met. If anyone lives near the Philadelphia area, and does not attend CHOP, I would reccomend it because I feel like they have very high standards of keeping each and every patient protected. Of course, since CHOP is a children's hospital, I am going to be switching soon, but if you are a parent of a CF child, I would highly recommend CHOP if you are at all worried about your child contracting other germs or "types" of CF bugs.
Then again, there is no sure positive way of preventing yourself or child or loved one from contracting problems associated with CF. Bugs come and they go sometimes. Even though hospitals are supposed to be the cleanest things, it is more possible to get a "bug" from there than simply going to school with non-CF kids, simply because they are "so clean." I don't know how true this is, but one of my professors recently told me, that the reason soooo many kids have allergies these days is because they don't build up an immunity to things in the air beause we are all so obsessed with cleanliness now. I kind of agree, but this also might just be my case of CF, because that is how I lived. Being exposed to many other kids, and I guess not being so clean as a child...and nowadays, I am still functioning pretty well compared to others. I know allergies don't really have anything to do with cepacia, but I thought I'd just give something to think about. I'm kinda totally off topic here, because I don't really know much about cepacia, but I figured I'd comment on how I felt about the cleanliness issue.
Then again, there is no sure positive way of preventing yourself or child or loved one from contracting problems associated with CF. Bugs come and they go sometimes. Even though hospitals are supposed to be the cleanest things, it is more possible to get a "bug" from there than simply going to school with non-CF kids, simply because they are "so clean." I don't know how true this is, but one of my professors recently told me, that the reason soooo many kids have allergies these days is because they don't build up an immunity to things in the air beause we are all so obsessed with cleanliness now. I kind of agree, but this also might just be my case of CF, because that is how I lived. Being exposed to many other kids, and I guess not being so clean as a child...and nowadays, I am still functioning pretty well compared to others. I know allergies don't really have anything to do with cepacia, but I thought I'd just give something to think about. I'm kinda totally off topic here, because I don't really know much about cepacia, but I figured I'd comment on how I felt about the cleanliness issue.
I got b.cepacia 8 years ago while i was in the hospital ( for the first time since i was a child) for a sinus surgery. I was well when i went into the hospital with high pft's, and left with b.cepacia and didnt find out till a few months later when i started getting all these lung infections that never got better with normal protocol. I am so angry that i had no idea that anything like b.cepacia even existed, and wasnt told i needed to be careful to do things to avoid it. I now have to be seen in a seperate room than the other patients, and at times it makes me mad that noone tried to shield ME from it, before I got it. I dont feel shunned from others, because if i had known about it, i would have done everything i could to avoid anyone who i even THOUGHT might have it. I am more careful when i go anywhere these days, to try and avoid people who have colds, and i make it a rule to use my hand sanitizer anytime i get back in my car from where ever i was at. Having b.cepacia has been a bit of a struggle, because it doesnt like to let up sometimes. Be more than careful anytime you have to go into the hospital, wipe everything with alcohol that you may touch or even think of touching. I try to avoid going into the hospital at all costs these days and do my iv meds at home when i need them.I used to think that when a patient left the hospital, the housekeeping staff disinfected the room, but now i know better after watching what they actually do ,and worse yet, DONT do.
~Diane / 39 / cf / diabetes / b.cepacia
~Diane / 39 / cf / diabetes / b.cepacia
My son is 18 and cultured Cepacia the first time a little over a year ago. He had a rough start with it. We don't know where he picked it up from. I use to spend a great deal of time racking my brain on it. Now I have chosen to spend my energy protecting others. I am a real witch when it comes to using infection control protocol when my son is hospitalized. I am sure our nurses get real tired of me correcting their slack in practicing "perfect" infection control