Tuesday, May 17, 2011


Technically I didn't hear it, I read it

  Burkholderia Cepacia

Often known as B. Cepacia, here is the medical explaination:
Burkholderia cepacia (B. cepacia) is a group of bacteria that is found naturally in wet soil and decaying plants, such as rotting onions.
Once B. cepacia enters the body, there are three possible effects and it is not possible to predict which will happen. Sometimes B. cepacia colonizes in the lungs, causes no symptoms, and has no long term effect. Other times B. cepacia colonizes in the lungs and causes damaging lung infections and inflammation that lead to a slow deterioration of lung function. In the worst case scenario, B. cepacia can spread throughout the body causing “cepacia syndrome”, which leads to a rapid deterioration of lung function. Cepacia syndrome is a serious condition that does not always respond well to treatment. Unfortunately, even with proper treatment, cepacia syndrome can lead to death within a few weeks.

I've read a lot of shitty things about CF, but when I read this I honestly got chills down my spine. Onions don't get bought in our house unless I am using them for that nights dinner.

I'm having a hard time writing this because I don't know how to describe why I feel this way. It is not a worry, it is a dead set fear. Yes, there are other bugs out there that are also harmful to CFers. Yes, B. Cepacia is not very common, but it is there, and my brain has decided that I am going to be afraid of it.

People who have cultured B. Cepacia aren't allowed to attend CF activities or functions. They are often also automatically taken off the transplant list.

A couple of days after I learned about this bacteria, I was talking to a friend whose sibling has CF. They are the only person I know with CF who I haven't met through the CF community. I asked about their health and was told that they had picked up a bug that the Dr's were worried about. When I asked what it was, my friend couldn't remember exactly except that it sounded like "spacer". My friend had tried to look it up on the internet but didn't know what to read. The internet can be a dangerous place! We weren't in the right place to have a proper conversation and the coward in me was glad. I guessed correctly that B. Cepacia was what we were talking about.

I cried that night about how unfair life is. Our friends know the sibling is sick, but they can't realise the magnitude of it. I do and I think about it often, and again I get chilled to the core.

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