For those with cepacia

A

anonymous

New member
I guess I'm just a questioning, posting fool tonight, so forgive me for all the inquiries....

I've wanted to ask this question for some time.

I notice several on here have cepacia... I'm wondering how long you've had it? I was always under the impression that no one can live long once diagnosed with it, and those I've known that have had it, usually are much sicker than those without (on average). I think its absolutely amazing, and a very very positive thing, that many on here that post who have cepacia are doing well! I am wondering what your "secret" is, and again, how long you've had this diagnosis? The fact that any of us can get it at any time scares me, but seeing those on here who have it and seem to lead "normal" lives, makes me very happy. Anyone who cares to share their story of battling cepacia, please feel free.

Thanks,
Sonia
28 w/CF and CFRD
 
C

catboogie

New member
sonia,

in my case it is simple: i have genomovar 2, not 3, which is the bad one. i have had it as long as i can remember. whenever i am on ivs i am treated for pseudo and cepacia, i have never had to treat the cepacia on its own.

laura
 
J

JustDucky

New member
Hi Sonia...I have had cepacia for just about a year now...at first it was sensitive to some antibiotics, but right now, the docs are having a hell of a time treating it due to my multitude of allergies and its inate resistance to most antibiotics. I guess every person is different, I know a few others who have the cepacia as well and each have fared differently....some really go downhill fast after contracting cepacia and then there are those who have been living with cepacia for nearly a decade! With myself, I have found that I have been on IV's about every other month due to flare ups, I culture it everytime....but about every other month I get feverish, aches, my cultures show high colony counts and my lungs are junkier along with my sputum, so the docs decide to nuke me with heavy antibiotics, this last round will hopefully be done with the 6th week of IV's...I do feel better, not so sick and my sputum is starting to look like its norm so my fingers are crossed.
I am sure you will see lots of variations on how cepacia has affected those who have that nasty bug...it never ceases to amaze me how everyone is different with this.
Hope I have helped with your questions and curiosity! Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

littlemisssilly

Guest
Hey Sonia,<br>
<br>
I've been culturing Cepacia for about eight years now. The only
other thing I culture is Staph. I never associated with any other
people with CF, I have only been hospitalised twice for IVs (every
other time it's been home IVs) so, I will never be able to track
down how I acquired B.Cepacia. To be honest, I have never had tests
performed to see which genomavar I am colonised with... I probably
would rather not know.<br>
<br>
When I acquired the B. Cepacia my doctor said not to worry about
it, that it had been known to be associated with a rapid decline in
health in some people with CF but that it was inconclusive whether
it was in fact the B. Cepacia itself or whether the fact that the
people which deteriorated after acquiring it were already quite ill
and the Cepacia unfortunately tipped them over the edge. So, I was
none the wiser for many years.<br>
<br>
My health has deteriorated over the last 8 years, I am more tired,
spend more time on antibiotics (all oral or via neb) and have to be
vigilant with my physio etc, the longest I can go antibiotic free
is about twelve weeks. BUT my FEV1 is still 75%, at the end of last
year I got it up to 83% even when I was antibiotic free for eight
weeks! I haven't needed IVs for six years now... so it's awfully
hard to pin point my decline to the Cepacia itself as opposed to
just the progression of CF. 8 years is a long time in CF years so
who knows?<br>
<br>
To be honest, there is a lot of mis information about Cepacia and
other bacteria. There is no general rule about what Cepacia means
once you've acquired it, each person with CF is different. MRSA or
some of the mycobacterium can be just as damaging to CF health as
Cepacia, it also depends on how treatable the bacteria is
regardless of its type. Even though my Cepacia is resistant to
Cipro, I still take oral Cirpo when sick and without a doubt after
a week of taking it, it works and I am better. So, it's all very
individual, it's important not to generalise. Hope that
helps. 
 
A

anonymous

New member
WOW! Thanks, you guys! Call me misinformed! I appreciate your posts. It seems its not such a morbid decline afterall... I personally have worse lung functions that you, LB! And, I had no idea that there are different strains of cepacia.

Jenn, my fingers are crossed that this "clean-out" helps you... please keep us posted. You're in my thoughts and prayers.

This thread is just a reminder of how different and how STRONG all of us are.

Sonia <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

littlemisssilly

Guest
I always wished that science could just create vaccines for bugs
like PA, Cepacia etc so that we would never contract them in the
first place! Wouldn't that be nice? Instead of getting our hopes up
over some cure that was meant to come 10 years ago...... sorry, I'm
a bit skeptical over the 'cure' thing, CF is just too
complicated.<br>
<br>
<br>
Jenn, I hope you feel better.  
 
D

Diane

New member
Hi Sonia,
I've had b.cepacia for a bit over 9 years now. When i first found out i had it, i knew exactly where i got it. I was fine till i had a sinus surgery. The sinus surgery was my first stay in the hospital, and my cf was very mild with high pft's. The day after surgery i felt awful and stayed that way. I started getting congested and feeling unbelievably tired and started having low grade fevers every day. This went on for about a year till they discovered i had cepacia. I never even heard of cepacia before and had no idea i needed to even worry about that if i was ever hospitalized. I was furious i was never told about the dangers of being in the hospital and being super cautious. I was relieved to some crazy degree to know WHAT i had, but was scared crazy when i started to hear more about it. I was sure i wouldnt live past 2 years from the things i read about it. It was a very trying time in my life especially since i was also going thru a divorce . I am on a rotating regimine of 3 antibiotics at all times to keep the infection at bay. When things go haywire , i go on an iv. I rarely go into the hospital as i do my iv's at home. I only go in the hospital when i absolutely have to, like when i had to have 2 embolizations. I now have a much better understanding of cepacia and cf itself, and i avoid the hospital like the plague. I also use hand sanitizer just about everywhere i go. I started using the vest 3 years ago, and i also exercise and stay as active as i can. I started taking glutathione orally 3 years ago and it has made a big difference for me. Gave me back the energy i had pre-cepacia. I have genomovar III, which is the most troublesome which explains why i cannot be off of antibiotics without bad repercussions from my lungs. Cepacia is a struggle to deal with, but i plan on dealing with it till i am a ripe ol' age
 
D

Diane

New member
the fact that noone really cleaned anything pretty much told me a LOT. I didnt know how bad the cleaning they did was till i was hospitalized after i was diagnosed with cepacia. They never once cleaned the shower the whole 2 weeks i was there, their idea of cleaning the toilet was to pour some colored liquid in it and leave it there, no wiping of the toilet seat at all. One time they transferred me to a different room across the hall and i had to wait hours till they finally got it "cleaned up", when i got in there, i saw mucus someone must have coughed out no the floor and blood on the wall as well as tiny specks of blood in the bed rails. THEY CALL THAT CLEAN? Its no wonder i got cepacia. Cepacia can live for hours on a surface and up to a year in a moist environment (hence the shower) needless to say the phone never once was cleaned, i can only imagine how many types of germs and infectious bacteria is in there. When i was hospitalized for hemoptysis i asked the nurse for a box of alcohol wipes and wiped every single thing in that room that i might touch or even think of touching. housekeeping in the hospital isnt what it used to be where they used to steralize the beds when a patient leaves, and wipe everything down, they dont get paid enough and they are understaffed so they cut corners. Those cut corners can cost us with cf in a bad way. Had i not seen this myself i would have never known.........sad
 
S

Scarlett81

New member
Howdy,

I've had cepacia since I was 14 or so. I feel it more now that I'm older. Like-thicker mucus, more trouble with energy, running.
But my pfts have actually increased as of late. So, its not impossible. I have read that too about it being a bad bad thing as far as decline. But, I havent experienced it so far.
The only major dissapointment is pregnancy. Having cepacia can complicate pregnancy alot more, which is the main reason why I won't be able to have kids naturally. And that sucks big time. I'm sure this is not the case for all, but for me it is.

I don't know if there's a secret. Luck maybe? I just work as hard as anyone else.
 
J

JustDucky

New member
Thanks for the well wishes guys...I really appreciate them! Diane, I can totally relate to hospitals...I too avoid them like the plaque, I am pretty sure that I got my cepacia in the hospital as well, and since then, well you all know the story. I try to do all of my IV's at home, the only time I would even consider going into the hospital is if the docs put me on something like 3 IV's at once and the schedule would prevent any kind of rest. Heck, I am having a time with the ones I am on now...but I am doing it and have one week to go if all goes well (Keep your fingers crossed!!)
When I do go into the hospital, I am so vigilant of what others do when they come into my room. For instance, I am always watching to see if the doc washes his hands (eyes on the staff as well), I also have seen how the rooms are cleaned...sometimes it is scary to see. It is no wonder we get so many cooties from hospitals.
Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
F

Faust

New member
Don't let cepacia get ya down. Turn that frown upside down...With lil Willis!!!


<a target=_blank class=ftalternatingbarlinklarge href="http://img77.imageshack.us/my.php?image=funny1yq.gif
">http://img77.imageshack.us/my.php?image=funny1yq.gif
</a>

Yes I suck at HTML, was looking to see if it animated on the screen.
 
F

Faust

New member
K...I guess this site won't let us have animated gif's in our sig eh?


If we can, someone wanna try and add lil willis to theirs and tell me what i'm doin wrong.
 
A

anonymous

New member
There's a topic in the family section about kids and cepacia and someone posted that their doctor told them not to worry about cepacia 'cuz "children don't usually get it". Little worrisome for a doctor to say. I try to stay vigilant with DS. Last clinic appointment the waiting room looked filthy, there was sticky stuff all over the kiddy table and I've noticed nurses and doctors who don't wash their hands or use hand sanitizer.

When DS was in the NICU for 4 weeks, my MIL who is a nurse and once worked on a TB floor 20+ years ago commented about how they're all so vigilant about hand washing, but the RT's go from bed to bed not wearing gowns and they pick up each child and hold them up to their chests to do cpt, change cannulas, suction.... Looking back DS was fortunate to "only" come home with an infection caused by fecal material. Liza
 
T

thelizardqueen

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

K...I guess this site won't let us have animated gif's in our sig eh?





If we can, someone wanna try and add lil willis to theirs and tell me what i'm doin wrong.</end quote></div>

Hmm...

<img src="http://i11.photobucket.com/albums/a162/edawkins/funny1yq.gif">
 
S

Scarlett81

New member
I have this pranoid thing about onions.
Ever since I read that crops of sweet onions that were found rotting were found with cepacia.
I love onions, and you don't know what's in all yur food that u eat. So I try to buy organic, wash everything good, and I do cook the heck out of most veggies.
But when I'm at the grocery store, I squeeze the onions to see if they're even slightly rotting! They must think I'm really picky.
 
H

HairGirl

New member
I have B. Cepacia, #3, the worst. Have had it since I was little, I
did go to CF Camp so I might have gotten it there. It hasn't been
my biggest problem! Hemoptysis is my biggest problem. But I'm sure
the Cepacia doesn't help. There are only two antibiotics that I'm
not resistant to 'YET' I've been on them for the last 5 years and
think I'm developing a resistance to them. Hope they can come out
with a new one!
 
F

Faust

New member
I've heard of people getting cepacia supposedly by say playing football or something similar that kicks up loose dirt in old fields that used to be heavily used for agriculture, obviously during a time when cepacia was used widely for agriculture. Pretty freaky.
 
A

anonymous

New member
One of DS's doctors told us last week he didn't want him playing football, being around any excavation -- mainly because of kicking up dirt and potential for molds. I've heard that cepacia is used in the sugar beet industry -- name brand deny or something like that to prevent rot.

Liza
 
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