You’re going to enjoy this story, trust me. We all know and hate “good old” pseudomonas aeruginosa with a passion, right? It’s resistent, it never really goes away, and we have to take 3x more meds for it than anything other than airway assistance.
However, with all of that struggle comes familiarity. I smell like tomato soup when I have an epic bloom of P. aeruginosa. It turns to Corn Chex when I have staph take over the show. When things turned a nasty smell about 3 weeks ago, Beautiful got concerned.
For many weeks now, I’ve been clearing out plugs. They are spongy and shaped like the alveoli (or so I imagine from anatomy classes). They were concerning for a couple of days, but then I concluded in my massive years of wisdom hacking up gunk that this was a good thing. It seemed that I had reached the bottom of my lungs.
Then 3 weeks ago I started back up with really liquid gunk. The color changed from my usual manilla beige to a camo green. The smell was overpowering in the car when I’d let loose with a good spasm. Someone in the car would have to cover her nose for a minute.
We finally decided that if I wasn’t better the Friday before last that I’d go in to clinic. I had several days I’d get better and then get worse. I felt hot and clammy but my temp never rose above 99.2. I had body aches. I had a really stuffy nose… for one day. I had no energy for the entire time. Try to sleep in, try to get up later – nothing was working.
I gave them a fresh culture on Monday and they told me to come in on Friday to see what was going on. My PFT from a month ago (read: 1 week before getting what I have) was a 40%. That was down from the 43% prior to that. On Friday I blew a 41% – stable. I’ve been stable and slowing increasing for 3 years now.
“Why do I feel like utter crap?” I asked our newest doctor on the team (who has improved a TON, by our evaluation of the appointment). He said the flu shot has been 30% effective this year, but I didn’t have a fever. He said RSV is rampant, but I didn’t have those symptoms (which I also concluded via WebMD and 2 other gov’t sites on Monday). He said what healthy people are getting knocks them out for many weeks and Beautiful said at least half of the husbands of the CF Wives Facebook group are in the hospital or dying now.
What do I have?
Yup. Asthma. In fact, I am not even remotely sick. My culture came back today free of any P. aeruginosa. None. I have Alcaligenes xylosoxidans or Achromobacter xylosoxidans and only a light growth, at that. Light growth of one bacteria. I don’t remember the last time I didn’t have P. aeruginosa in a culture and one of the more recent cultures it was all the way up to “heavy” growth. I wasn’t sick at all – far from it, in fact.
Every day around 1pm, I start to get short of breath and even wheezy. It escalates until dinnertime and then I need to do my treatments. His suggestion: use your rescue inhaler every 4 hours because my Albuterol nebs only last 4-6 hours, so keep the inhaler handy. I can even try to stay ahead of it if I want.
My asthma has reached a point where stress induces a tight chest and wheezing. Even today, I was discussing a stressful topic with Beautiful and I felt it come on and I took a puff. She’s so awesome, we changed the subject and carried on while it took effect.