I don't have Cepacia and my prayers are with everyone who does. I know it must be very difficult. I was wondering for the people who do, if you could tell us where you think you picked it up. Hospital, another patient, etc.. I'm very cautious about it and do what I can to avoid it. Thank you in advance to those who respond.
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How did you get B. Cepacia?
- Thread starter anonymous
- Start date
Hello- I have b. cepacia and i do not know for sure where i picked it up, although i highly suspect it was in the hospital. I have almost no contact with other cf patients, and the ones I have known in my life do not have b. cepacia. My hospital never used to the kind of precautions that they do now...to think how they used to encourage all the cf kids to hang out with eachother. But there are strange things too, like i've read that some organic farmers actually use some kind of fertilizer that contains a form of cepacia (wouldnt that be tragically ironic, having always tried to eat organic when i can), and cepacia is after all, something that comes from onions (yuck). I suspect I picked it up from the hospital though, because that is the only environment i have been in where i would have had prolonged exposure to such an organism.hope this helpscaitlin
AbsintheSorrow
New member
Cepacia really comes from onions? I don't suppose I could get it from eating them, could I? Onions are one of my smelly favorites. Heh. <img src="i/expressions/rose.gif" border="0">
I know exactly where i got b.cepacia from. I was always pretty healthy my whole life with VERY little lung involvement and very high pft's. I hadnt been in the hospital for many years (last i was, it was for diabetes problems) Then i developed sinus problems that required surgery. I had no contact with any other cf patients in the past, and did not even know something like cepacia existed. Well, i had my surgery stayed in the hospital 2 days and never felt well again. The day i was to be discharged i started getting a lung infection which was odd since i came to the hospital in prime health. I left taking heavy antibiotics. I started to notice as time went on i was extremely tired a lot, started running these odd low grade fevers, and couldnt seem to shake this crappy feeling. Taking a shower was now a major project because i was so tired. Finally a year or so later we found the cepacia in my sputum culture and i knew darned well how i got it. I was very mad as well as terrified. I wound up being in the hospital about 8 times since then (1997) and i now can see how i got it. The housekeeping staff does not clean or disinfect the shower at all ( b.cepacia can live for years in damp surfaces), they also never disinfect the toilet, they simply poured something in it and flushed it, no wiping. They dont wipe down the bedrails or the mattress when the last patient leaves. NO WONDER I GOT THE AWFUL INFECTION !!!! Word of caution to anyone who has to be hospitalized, take antibacterial wipes with you and use them on ANYTHING YOU TOUCH ( bedrails, phone, tv remote, door handles, anything ) always wash your hands when you leave your room and return . Its your life that could be on the line. If i had known about b.cepacia i would have never had the damned surgery and just suffered the sinus problems. I figured with my good health, the surgery would be a breeze. Kind of funny how the surgeon and my doctor told me that by having the surgery, it might actually stop any future lung infections from starting. My fev1 is now at 43%. I have to work at staying well now, and it isnt easy. It breaks my heart to think this could all have been avoided if i had info on b.cepacia. and knew how to protect myself. PLEASE BE CAREFUL , if you have to be hospitalized.~Diane 39 / cf / diabetes / b.cepacia
i always clean the surfaces in hospital rooms. the cleaners do such slack jobs. they miss the bed rails, miss most of the floor, use the same rag in dirty solution for all rooms, dont clean the shower handles. its disgusting. i have to go into hospital on sunday to have a port put in, i guarantee you i will be going wild with cleaning!
AbsintheSorrow
New member
Good luck with the port placement, Kylie. More than anything else, the one thing that bothered me after the incision healed was my tissue getting used to the odd thing in there. But after it got used to it, it's been a breeze, and so worth it. <img src="i/expressions/rose.gif" border="0">
Hello-My son has had Cepacia now for 9 months. For us, we actually have no idea where it was he acquired it. Although I will say that prior to to acquiring it, our hospital was a little lack on infection control. We had our sputum culture in the hospital and the preliminary test showed typical CF bugs. Within 5 days of our discharge I was called to the doctor office with the news of Cepacia. Witin a couple of monts 2 other friends of ours also cultured Cepacia(one was in the hospital with us and one attended the same school). We have had a create deal of up and down battle with Cepacia and have seen a constant decline in our lung functions since. We have recently been told we are "pan-resistant" and the one antibiotic that did seem to work, we are having allergic reactions to. It has been a medical adjustment and a mental adjustment. We battle with CF w/Cepacia,CFRD,ABPA, Asthma,GERD,and more areas than I can list.Currently, I am in a legal battle with his father because he says he is isn't sick enough and wants to cancel his health insurance and no longer wants to assist with his needs since he is 18. Due to all the medical and mental adjustments he was unable to attend school his senior year but does plan on going back(through homebound) this year. It has been a nightmare. For us knowing where we obtained it is no longer an issue. Trying to stay healthy and educating others about the importance of infection control is. So make those nurses and RT's wash hands, not share patients, stand up and speak out. I would complain on a daily basis even as late as our last hospital stay about nurses(on an isolation unit) not wearing gowns or mask. Even knowing that the hospital caused at least one of the dross infections. You still have to constantly educate them....................