Downs and ups

Well, my numbers were terrible. That wasn’t really a surprise though, because I’ve been feeling pretty terrible. My pulmonary function is back down to 45%, though fortunately I don’t feel QUITE as bad as when I hit 45% in November. We’re not entirely sure what’s going on. It’s possible I had a virus a couple weeks ago that my immune system knocked out right away, but which left lingering inflammation that hasn’t faded. It’s possible that we tapered the Prednisone too quickly and didn’t give the new injectable asthma medication enough time to kick in. It’s possible that the various infections in my lungs just aren’t very responsive to antibiotics anymore. Or it could be any combination of these factors.

It’s also possible that there’s a different, untreated infection acting up and causing me problems. Recent sputum cultures have shown 2 new pests hanging out in my lungs: a second fungal infection called fusarium to keep my long-standing off-and-on aspergillus infection company, and another bacterial infection called MAC (myobacterium chelonae specifically, for the medically inclined). This is in addition to my usual pseudomonas and staph infections, of course. I feel like a freaking petri dish these days. I already started an antifungal in November, so hopefully that should address both the fusarium and the aspergillus. Treating MAC, however, is more complicated. Apparently it involves taking multiple antibiotics simultaneously for a long period of time, and they have a lot of potential medication interactions as well as side effects.

For now, we’re upping the Prednisone again to see if that helps bring things back under control. If that doesn’t work, we’ll probably try IV antibiotics. And if that doesn’t work, we’ll try treating the MAC and hope that finally makes a difference.

On a more celebratory note, I have the best CF team in the world! They surprised me by coming in to sing happy birthday and give me a present at my appointment! Unfortunately they won’t be able to come to the big birthday bash, but it was so super sweet of them to celebrate with me at clinic!

I’m not thrilled to increase my steroid dosage again, but I guess it’s better than feeling terrible. I can definitely use the extra energy for my big exciting party tomorrow!!