Cepacia

princessjdc · Jun 13, 2007

Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

princessjdc · Jun 13, 2007

Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

moxie1 · Jun 13, 2007

I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1 · Jun 13, 2007

I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1 · Jun 13, 2007

I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1 · Jun 13, 2007

I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1 · Jun 13, 2007

I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1 · Jun 13, 2007

I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

Diane · Jun 13, 2007

I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

Diane · Jun 13, 2007

I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

Diane · Jun 13, 2007

I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

Diane · Jun 13, 2007

I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

Diane · Jun 13, 2007

I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

Diane · Jun 13, 2007

I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

beleache · Jun 13, 2007