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Feeling Sick. I have Asthma. Pseudomonas-free at Last!

Pseudomonas aeruginosa

P. aeruginosa

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.

Strange symptoms

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.

Clinic

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?

Asthma.

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.

Treatment

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.

Comments

  1. Awesome news on the P.A.! I love Cayston because it has led me to be P.A. free as well in my recent cultures! So happy to hear this, but not happy to hear about the asthma part. At least there are rescue inhalers. I know my asthma acts up more depending on the season, but I don’t know if there’s really enough variety down in Florida for it to be a seasonal change? I’m so happy to hear that you’re stable though! 🙂

    • I wonder why it took over 2 years for it to finally kill it off, especially since my last culture was still showing moderate, and somewhat recently, heavy growth. Weird.

      FL has pretty bad grass and tree seasons. It’s pretty much through the roof right now. I do miss major seasonal changes, but we do get some around December thru Feb. It’s about to get hot for a very long time.

  2. pleasepassthesalt says:

    How cool that you’re PA-free! Hopefully you’ll continue to culture that way. I actually have been PA-free for about 10 or 12 years, and I know that it’s technically not something doctors think acheivable, but for me, rigorous TOBI for a couple of years kicked it (such that when I moved across the state and switched clinics, my new doctor asked why on earth I was even on TOBI). Sorry you are having asthma symptoms. I can totally relate. And when I’m asthamtic, that’s when I’ve coughed up plugs. For me, it REALLY helped adding a plumicort nebulizer twice a day. Doesn’t take more than 5 minutes, so it’s not a huge inconvenience in the routine. Hopefully your asthma symptoms will decrease soon! Glad to see you blogging again.