I just cultured cepacia

[Diane]

I've done three of them at a time also ( iv's). If you read my first post, i mentioned i go on iv's once or twice a year , one of them always being Merrem .
Believe me , when you have cepacia it certainly seems like no-one is doing anything at all. Is this Amy?

 

[NoExcuses]

.

 

[anonymous]

Cory cultured B.Cepacia exactly 3 years ago. It was a nightmare! I remember ealking out of the doctor's office stunned, completely numb. We do have a very aggressive doctor so he immediately put Cory on a 3 antibiotic "cocktai"(IV) and ordered a Bronch to have a closer look. When all the test came back it showed Cory had Genomovar III. "Can it get it any worse". Cory was on quick decline. He PFT went from being in the 80's to now staying around 50. His doctor was beginning to beleive he was showing signs of having Cepacia syndrome.
Cory is fortunate to have the CF doctor he was. Cory cuturing Cepacia ticked him up. One day as I was in tears in the doctor office, he said " I am not quitting, we will fight this as hard as we possible have to". He researched and research, talking to doctors all over the world on the possitive results they had with Cepacia.
We started using a combination of 3 IV antibiotics, 2 oral antibiotcs and 1 inhaled. Cory did stabilize, start to get his energy back, and his lung functions started to improve.
That first month after culturing Cepacia, he stayed on antibiotics for almost 2 1/2 months but since this it is usually 3-5 times a year for a 2-3 week course. This summer has has been the longest without the need for IV's-4 months.
His PFT's have started to drop again (low 50's) but Cory doesn't place all of faith in the tests as he said he feels the best he has in a long time.
Cepacia is a complete pain in the A@@. It is the nightmare in the closet. It is not an automatic death sentence but it dow rob you of the life you once knew.
Although there is not direct new drugs to help people with Cepacia, there is research on it. There was (and may still be going on) the study of inhaled Aztreonam for people with Cepacia. They have also shown that even though it shows as an resistant antibiotic Azithromycin has benefits for individuals with Cepacia. I too wish there was more research for it. Spending the money for research for something that occurs to 3% of the Cf population is something that is not a priority. Sad but true.
Cory cultures show he is resistant to all known antibiotics. Scary! But with the use of "cocktails", we are lucky to still gain from the benefits.

 

[momtoCory]

Sorry, I didn't realize that I wasn't signed it

 

[lightNlife]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Cory cultured
B.Cepacia exactly 3 years ago. It was a nightmare! That first month
after culturing Cepacia, he stayed on antibiotics for almost 2 1/2
months but since this it is usually 3-5 times a year for a 2-3 week
course. This summer has has been the longest without the need for
IV's-4 months. His PFT's have started to drop again (low 50's) but
Cory doesn't place all of faith in the tests as he said he feels
the best he has in a long time. Cepacia is a complete pain in the
A@@. It is the nightmare in the closet. It is not an automatic
death sentence but it dow rob you of the life you once knew.
Although there is not direct new drugs to help people with Cepacia,
there is research on it. There was (and may still be going on) the
study of inhaled Aztreonam for people with Cepacia. They have also
shown that even though it shows as an resistant antibiotic
Azithromycin has benefits for individuals with Cepacia. I too wish
there was more research for it. Spending the money for research for
something that occurs to 3% of the Cf population is something that
is not a priority. Sad but true. Cory cultures show he is resistant
to all known antibiotics. Scary! But with the use of
"cocktails", we are lucky to still gain from the
benefits.</end quote></div><br>
<br>
Thank you for sharing about your experience in dealing with this. I
wholeheartedly agree when you say "it's not an automatic death
sentence, but it does rob you of the life you once knew." This
has been my experience as well. Sometimes I do fine and feel great
even with lower PFTs than what I had at my former baseline.
However, because I am allergic to so many medications, each
infection I get can become quite complicated. I am encouraged by
the research that is going on, and as I wait for the latest and
greatest breakthroughs, I do my part to be wholly compliant with my
doctors orders so that I never have to deal with thoughts like
"if only I had taken better care of myself" or "what
if I had tried treatment sooner".

 

[blackchameleon]

how do you "get" cepacia? is it passed on through air
particles? how does hand washing stop you getting a "bug in
your lungs" so to speak? i am meticulous bordering on
obsessive-compulsive when i am in hospital with diligence to
sterilizing everything (no wonder i AM as sterile as a eunuch), but
also keep my distance from anyone with cf. im keen to learn more
about how we pick up these nasty little buggers. thanks in advance,
Blacky.

 

[blackchameleon]

how do you "get" cepacia? is it passed on through air
particles? how does hand washing stop you getting a "bug in
your lungs" so to speak? i am meticulous bordering on
obsessive-compulsive when i am in hospital with diligence to
sterilizing everything (no wonder i AM as sterile as a eunuch), but
also keep my distance from anyone with cf. im keen to learn more
about how we pick up these nasty little buggers. thanks in advance,
Blacky.

 

[lauren]

Hi!<br>
<br>
I got cepacia when i was +-4 (I'm 19 now!) . Others kids also got
it from the hospital...so someone wasn't cleaning properly! The
doctor and my parents put me on IVs every 3months for a few
years, adopting an aggressive approach. They stopped them though
because i began to build up resistance to the antibiotics.
 Anyways the cepacia doesn't show up to often, and there
hasn't been too much of a decline in my health, besides the norm.
that you get with having CF.  Other infections cause me
more problems!  So don't panic as it isn't always
too much of a problem... my cepacia, as of yet, hasn't really
effected me much.<br>
<br>
This was to just give you some hope!<br>
<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
lauren<br>
19 f w cf<br>

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blackchameleon</b></i>

how do you "get" cepacia? is it passed on through air
particles? how does hand washing stop you getting a "bug in
your lungs" so to speak? i am meticulous bordering on
obsessive-compulsive when i am in hospital with diligence to
sterilizing everything (no wonder i AM as sterile as a eunuch), but
also keep my distance from anyone with cf. im keen to learn more
about how we pick up these nasty little buggers. thanks in advance,
Blacky.</end quote></div>

This has been mentioned before but what about everyone using the same PFT machines?

 

[anonymous]

Lauren that's a pretty mild case of cepacia you've got yourself there....do you know what genomovar you have? That means what 'type', there are nine types......

 

[anonymous]

Hi, no sorry i don't know what type. After reading this forum, i asked my parents as i to was curious, but they didn't know either. I really never realized cepaica was as bad as it's been descriped here. I always knew i had the 2 bad bugs, cepacia and PA, but didn't realize how lethal cepacia could be, it's kinda scary! The PA is the one that causes me problems.
Hopefully my body continues to live in harmony with the cepacia!

Lauren
19 f w cf

 

[anonymous]

hi again Lauren....tell me, how do you know which of your bugs is causing you the most grief? You say that your PA is more trouble than your cepacia but how do you know this? I too culture PA and Cepacia and i've often wondered which of the two is giving me more trouble.....but don't know how to find this out.

 

[anonymous]

The last time I cultured cepacia was in 2001, and i've cultured PA at a more recent date than that...so thats why I say the PA causes more problems for me. I actually, though, get lots of different infections.
If you have any more questions just pm me!

Lauren
19fwcf