wanderlost
New member
What is b. cepacia and how can you get it? I have read a lot of people's comments who say they developed it. Can I avoid developing it?
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what is b. cepacia?
- Thread starter wanderlost
- Start date
Mockingbird
New member
It's a bacteria infection sooo, just stay away from any and all bacterias and you should be fine. =-) In reality, though, i think the easiest way to catch it is from other CFers, so just make sure you wash your hands a lot when you go to the clinic. And make sure your doctor washes his/her hands as well! And try to stay out of the hospital, other than that, I'm not sure there's much else you can do.
For those of you that have b cepacia, do you have any vague idea where you may have picked it up?
If you go to the website that Nobody posted, it's interesting to find where the CDC think that some cases of b cepacia originated (mouthwash, water). It's enough to make you paranoid of everything, that's for sure<img src="i/expressions/face-icon-small-confused.gif" border="0">
If you go to the website that Nobody posted, it's interesting to find where the CDC think that some cases of b cepacia originated (mouthwash, water). It's enough to make you paranoid of everything, that's for sure<img src="i/expressions/face-icon-small-confused.gif" border="0">
I'm betting most cepacias will say they picked it up in the hospital. (That's where I picked it up). Awhile back (I'm not sure if it was this board or another cf board) people were sharing what precautions they or their clinic do/do not take. The one thing that was clear to me is that non cepacia cf'ers trust that clinics and hospitals are sanitized and someone is looking out for them (and truthfully, most hospitals/drs probably do their best to stop the spread of germs, but it only takes once for them to forget to wash, clean, whatever, and that's the time they would have wished they would have been masked and insisted whoever washed their hands or gloved up.) When you get cepacia, you regret letting your desire to appear kind and cooperative and not paranoid, and wish you would have been extreme in taking precautions, and that someone would have made sure you were aware of the risks of getting it (until I got it, I briefly perused information on cepacia, then disregarded it). I'm betting those that don't have cepacia will think I'm overboard, and those that have it will totally undestand. I do, however, remember reading one mom who always personally disinfected her daughter's rooms at the clinic or hospital, and she still got it. Hopefully, as they keep knowing more about the germ, the numbers of infected will decrease. Meanwhile, my advice - insist on reverse isolation. And yes, I know all about cepacia, how it is in the environment, not just hospitals. But in the medical fields best judgment, cf'ers get it from other cfers or from things contaminated in hosptials. Best to all.
I know i got it from being in the hospital. I was very healthy all my life with cf and then started having problems with my sinuses. I went into the hospital ( for the first time) to have a sinus surgery which was supposed to be a preventative type of thing so my sinus infections didnt cause me to start having lung infections. I went in the hospital feeling very well with high pft's, and left never feeling that well again. Once i was diagnosed with the b.cepacia i had a few other stays in the hospital and can clearly see why i got it. NOT ONCE was the shower cleaned, their idea of cleaning the toilet was to pour some pretty colored liquid in the toilet and then flush it ( no wiping or scrubbing), one time when they switched me to another room There was a lengthy wait while they "cleaned" the room . When i got in there i saw that there was mucus on the wall and a blood stain on the floor. NO wonder i walked out with b.cepacia the first time i was ever in the hospital. I had NO IDEA anything like b.cepacia even existed so i had no idea i needed to take precautions to protect myself. Now when i need iv's i do them at home where i know i am in a clean environment. NO more hospital for me unless ABSOLUTELY necessary.
<blockquote>Quote<br><hr>Now when i need iv's i do them at home where i know i am in a clean environment. NO more hospital for me unless ABSOLUTELY necessary. <hr></blockquote>
i do the same and i think more cf patients should do it. doctors should be telling the patients about home iv's instead of letting the patients ask about it. alot of patients dont even know you can do it at home, or they think its too hard which isnt the case. so of course they dont ask about it and they get admitted every time they need iv's.
pretty much everything is caught from the hospital [not the patients themselves] due to lack of hygeine. as diane said no one cleans anything properly and good hygeine isnt exactly expected from them anyway. there are no protocols stating that a room needs to be cleaned from top to toe. diane mentioned mucus on the walls. thats another thing that bugs me. i think that the walls of rooms should be cleaned. they are always so dirty and have all sorts on them. doesnt take much for the cleaners to grab a window cleaning sponge and quickly go over the walls with disinfectant. ive always said that i feel far safer being around an mrsa or cepacia patient rather than touching a hospital surface or letting staff touch me. its so unfair that its the patients getting the blame and punishment when its clearly poor hygeine on the hospitals part.
just another gross hospital hygeine story here. when i went for my sleep study the other week, i pulled back the sheets and found someone elses hair and eyelashes in there! i was horrified! the cleaner had obviously scratched their head and face while making the bed. because there are no protocols saying that cleaners must have their hair covered and not scratch their faces over beds they can put all the amount of hair they want in the bed. knits and all! the sleep study staff were just as horrified as i was and changed the sheets for me.
i do the same and i think more cf patients should do it. doctors should be telling the patients about home iv's instead of letting the patients ask about it. alot of patients dont even know you can do it at home, or they think its too hard which isnt the case. so of course they dont ask about it and they get admitted every time they need iv's.
pretty much everything is caught from the hospital [not the patients themselves] due to lack of hygeine. as diane said no one cleans anything properly and good hygeine isnt exactly expected from them anyway. there are no protocols stating that a room needs to be cleaned from top to toe. diane mentioned mucus on the walls. thats another thing that bugs me. i think that the walls of rooms should be cleaned. they are always so dirty and have all sorts on them. doesnt take much for the cleaners to grab a window cleaning sponge and quickly go over the walls with disinfectant. ive always said that i feel far safer being around an mrsa or cepacia patient rather than touching a hospital surface or letting staff touch me. its so unfair that its the patients getting the blame and punishment when its clearly poor hygeine on the hospitals part.
just another gross hospital hygeine story here. when i went for my sleep study the other week, i pulled back the sheets and found someone elses hair and eyelashes in there! i was horrified! the cleaner had obviously scratched their head and face while making the bed. because there are no protocols saying that cleaners must have their hair covered and not scratch their faces over beds they can put all the amount of hair they want in the bed. knits and all! the sleep study staff were just as horrified as i was and changed the sheets for me.
I want to stay out of hospital and avoid being infected. I got psuedomonas at age 2 well before I was ever hospitalised so it couldn't have been from there. When my pfts are down and I am unwell, I am usually exhausted, have been coughing 24/7 and the doc's more often want me to have a good rest. When at home I have to make up and do my own drugs which is often late at night and early morning. In hospital I can go to sleep and the nurse does it for me. The physio is a huge help two or three times a day which I wouldn't have the energy for at home and I have to keep driving to the hosp for levels, drugs etc. If I am up to it I can go to work in between from hosp. If I am at home for 2-3 weeks my employers question how sick I really am. If I go to work full time I don't get better cos I obviously need rest and intensive physio. I find physio very crucial to improving and couldn't do wat's required from home. I think sometimes I can just let go in hospital and be looked after for a change. Not to say I haven't done home iv's on many occasions. I think we are sometimes expected to carry on as if cf isn't a big deal when during an excacerbation we need extra care and at home we are trying to do all the normal things.
Anyway we all have to do what suits us I spose.
W
Anyway we all have to do what suits us I spose.
W
Doing IV's at home isnt all I need. Unfortunately the best CPT I get is in the hospital. The catering to my needs with food, meds etc & not having to worry about my daughter, the house, the animals etc is a big difference for me. Even with my husband & daughter pitching in with all their might, things still need my attention when I am home. My doctor & I realize that, but at the same time being in the hospital isnt the cure all. I guess finding the balance is the answer when I am really sick. There is not easy solution & every patient is different.
I totally understand about doing iv's at home and then keeping up with your normal schedule, not doing all your treatments, etc. It's a toss up which is more exhausting for me. I know absolutely everyone is different, but I still believe if you have cepacia you will never think the risk of germs in the hospital outweighs the continued schedule at home. There are too many surfaces to clean in the hospital room -- there is no way they disinfect everything. My friend worked at a hospital - she said she would never go, and if she did, she would take her own bedding, pajamas and bleach. And too many people go from room to room - medical staff, dietary, custodial. They are all transporting germs from room to room. Their stethoscope, blood pressure cuffs, ink pens, clothes, hair - no way they keep those things germ free. Like I said, insist on reverse isolation.
ccflewallen
New member
hmmmmm. so I think we need to start a revolt and demand Cf docs come to our house for our visits or we all stop going and they lose their jobs. Just kidding but this does make you wonder if going to the clinic is worth the risk. Or better yet going to the hospital for any reason that isn't a dier emergency.
ccflewallen
ccflewallen