May is Cystic Fibrosis Awareness month! Since I didn’t know anything about CF before I met Jesse, I’m taking some time to learn and share some information about CF.
Ordinary germs can be particularly dangerous to people with cystic fibrosis. When I catch a cold I typically feel crappy for a day or so and then I get better. However Jesse usually isn’t so quick to recover. Even after he gets over the cold, his lungs have to fight the effects of getting sick for a longer time. He’s tried to explain to me how his lungs feel after being sick or overly exhausted. He says they feel like plastic. Hard to imagine how that really feels. I think of trying to breathe in and out of a two liter bottle, having to inflate and deflate it with each breath.
Of course (like everyone else) we try our best to avoid people who are sick, but it’s really impossible to avoid all situations. Everywhere you go there are people coughing, sniffling, and sneezing. I tend to not get sick very easily, but it doesn’t take much exposure at all for Jesse to catch a bug. In the end you can’t think about it too much or you would drive yourself crazy.
The infection that Jesse is always working to keep under control is called pseudomonas. Once a CFer colonizes pseudomonas it’s pretty much impossible to get rid of it. CFer lungs are just too perfect an environment (like a nice warm and gunky greenhouse) for the bacteria to ever want to leave. Eventually pseudomonas takes over the lungs and becomes resistant to many antibiotics. That’s where Jesse is at now, and that’s why he often needs IVs when he does get sick because oral antibiotics are no match for his bugs. Luckily, the last couple of clinic cultures have shown only light growth of pseudomonas, which is pretty much his best case scenario.
Back in the day, Jesse used to go to CF camp to be with and get to know other CFers. Then they realized that all the campers were sharing all of their super bugs with each other, and camps stopped. Then they said CFers could have no contact with each other because it was too easy to get sick. That’s why the nurses make all the CF patients wear a mask at clinic, you never know what kind of germs are floating around those halls. Now we’ve been given permission to meet other CFers as long as we’re careful… three foot rule and no sharing drinks and such.
Hopefully I didn’t gross you out about germs too much, but now you know!
