Thursday, March 09, 2006

The Big Deal about B. Cepacia

Sometimes you do take your life in your hands going in certain places and it's very unpredictable,
but that's thrill of it,the excitement of it all.
I do like a little danger in life!!!

--Marc Almond

The results of last week's sputum culture have come back from the lab, and it appears that once again, B. cepacia is hosting a microbial gala in my lungs. Several years back when B. cepacia was first becoming such a hot topic in CF circles, I didn't really understand the full implication of how devastating this little bug could be. As research has expanded and more case studies have been examined, I have learned a lot more about B. cepacia.

B. cepacia's
first and foremost frightening aspect is that it is exceptionally resistant to all of the first line defense antiobiotics that are usually prescribed for those of us with CF. Rarely will one medication be sufficient to touch it let alone wipe it out. The trickiest part for doctors is in finding the right combination of antiobiotics that will have the greatest effect on the cepacia.

When dealing with B. cepacia, the "cure" is just as terrible as the disease. The medications that best combat cepacia are the heavy-duty ones with the nasty side-effects. In my particular case, the antibiotics that work best are the ones that need to be constantly monitored in order to avoid reaching levels of toxicity. The danger posed to the CNS, kidneys, and other vital organs is very real.

This is why those of us who culture B. cepacia must be sequestered from others with CF. My body already has adapted somewhat to this microorganism's presence; however, if I were to inadvertently pass along cepacia to someone else, the likelihood of passing along a swift and terrible infection is high.

I hate that having B. cepacia keeps me from being able to interact with others who have CF on an "in-person" level. On the other hand, I'm glad that such safeguards exist that keep me from harming other people. I can't even begin to imagine how awful I would feel if I knew that I was responsible for harming someone else--particularly someone else like me who already has enough of a struggle with health-issues.

"Cepacia," to me has always seemed to just be another term for a death sentance to CF people, then I heard there are different types of Cepacia and not all of them are as dangerous as that. I am confused by this horrific bacteria due to lack of understanding what it all intails.
I know that I have "A chroma-bacter" if thatis how spell it, so I to have to be in isolation, oddly my sister and I are always around each other but do not carry all the same bacteria in our lungs, just a coincidence,? hardly praise Jesus for the protection He gives us!! Yes, the way cope with things by expresing my feelings to people who understand what I am going trough ever since I was 16 all contact with other CF people has been cut off and left this disease even harder to deal with, thank God for my sis I would have not made it without her..I luv u lee! I know sometimes I don't respond to your e-mails but know I hold you as a close friend in my heart no matter how far the distance is, know that I am hear to listen, and pray for you, and know that I am praying for you and time to time I imagine how it will be when all of who seperated because of this horrible disease will be able to spend eternity with one another, never ever have trouble breathing again for we will be with the Breath of all Life!! I love you, by His love, Rebecca.
You're right...the "c-word" is often spoken with much trepidation. Only recently did I learn that there are multiple genotypes (flavors if you will) of cepacia. Of the 10 or so types, there are some that are horrifically devastating. The others are certainly problematic, but don't invoke the same kind of fear.

I'm in the process of having my latest sputum sample analyzed to determine which genotype it is. That may not be tremendously useful in terms of how my doctor proceeds with treatment, but at least it's one more piece of the puzzle in understanding CF.

Although my heart aches that you and Leah both have CF, I am sure you know how blessed you are to have that built-in support system. Sisters are good that way--at least in my experience. My sister doesn't have CF, but she and I have been through other trials and struggles that have helped us understand one another on a deeper level. I'm sure the same is true with you two.

In any case, I'm thankful for those out there in the blogging community who have taken the time to share their stories and have helped create a virtual community.
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I know this isn't suppose to be about family, but I wanted to post that through all this life, my brother (who is 2 yrs older wocf) has been completely critical in my survival. He beat me enough to keep me in line, but also was and is highly protective of me and my CF. He has been there when few others were, and is the only one that even comes close to getting what I(we) go through. I think our Father in Heaven knows what we will need and sends these people to be with us, chosen specifically for their skills and love for us, from before we came here.
Just my humble opinion.
btw, B. Cepacia free here for 32 years, also spent many summers at camp with all B. Cepacia postive CFers, until they closed all the camps.
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