Saturday, May 23, 2009

Sensitive question

We joined a pool today and spent all afternoon there. It's a great place, very laid back, not "pool club" like at all. More like just a big party in someone's back yard with music, grills, and pools.

I was wearing my Great Strides t-shirt and when I walked in, a girl about 10 saw it and said "I like your shirt." I said "Thanks, my son has CF" and she said "Me, too." I was a little surprised and I didn't really know how to respond. This has happened to me on a couple of occasions when Seamus has been with me and my first reaction is to want to grab him and pull him away from them, but of course I don't.

And what do you say to that? "Oh, I'm sorry to hear that" or "Wow, what a coincidence?" What I really want to say is "What did your last culture grow?" I'm mainly just worried about cepacia but how do you find that out without sounding rude? And she probably wants to know what Seamus is growing too but I can't just blurt it out. Seamus is going to run into this girl all summer and it's always going to be on my mind.


ssbean said...

I'm not familiar with everything yet, since we're just getting started. Hopefully you will also run across her mom or dad, then it should be easier to discuss things with them. If the girl is a teenager then she's probably able to understand why you are asking things.

Natalia Ritchie said...

My school of thought is CF people should always be seperated from each other. Always. That's how my mom and dad did thigs when I was little, and I later on when I was a teenager and adult. I have seen too many c negative people become positive as a result of being in the same social circle. My docs always tell me to remember that cepacia can be in your body undetected for 2 yers. Meaning just because someone is negative does not mean it is safe. This is what happened last year at my clinic, a group of kids were hanging out. All negative. There was this idea that this was safe. Within 9 months, 5 contracted cepacia, and now 3 of those 5 are no longer with us. I never understood why take those risks? The more doctors I talk about this with, the more tell me to do whatever it takes to keep myself cepacia free. I was even told by one of the leading infection control doctor in NY that we still don't know exactly how certain strains are contracted. She told me, if she was a CF patient, she would never be in the same vicinity as another CF patient, except when without choice such as clinic and hospital.
I think it's a scary reality, but I think it's good practice. When people acuse me of being rude or not being apart of the CF community, I just don't care. This is my life. And certainly I don't want to infect and harm someone else with my strains or infection.
I know it seems harsh, but I have seen such tragedy as a result of cepacia. xoxo