Breathing Deeply: My Life With Cystic Fibrosis

Today is Day 14 here at Camp Iwannagohome. My pulmonary function tests indicate that we've finally hit upon a winning combination of meds. I've been restarted on the Coly-mycin, but at a much lower dose than before. Pulmozyme is the latest and greatest edition to the lineup and that's working quite well. My FEV1 has climbed up to 2.14 litres. Plenty of room for improvement remains, but if things progress as well as they have in the last 4 days, I may be well enough to go home by Saturday.

Not much is going on around here. I'm starting to get "taste fatigue" from the few menu items that don't upset my system.

I'd like to rant for a moment about cepacia. I can handle a lot of the unpleasant and downright fecal aspects of cystic fibrosis, but the isolation from cepacia rips me to shreds at times. Cross infection control measures keep me in a world that can be very lonely at times. I cannot be around others with CF. I can't participate in events where other CFers might be present. I have to gown and glove up whenever I'm around medical equipment that others will use.

What bothers me the most is that I didn't engage in any risky behavior to acquire this nasty germ. There are people out there who willingly put themselves at risk every time they have unprotected sex. Why don't STDs have a social stigma anymore? Why is cross infection in the CF world so heavily regulated when the world at large is far more dangerous? What's next for cepacia patients? Do we need to seal ourselves into a Teflon body suit before venturing out into the hospital halls?

Yes, I'm frustrated. I've been here too long and now that I'm feeling better I'm also a bit feisty (and snarky!) I can't wait to be home where things are familiar and I'm no longer a specimen in a petri dish.