• Over the last year, I’ve been growing cultures which, is normal for CF, but at the same time, it’s the same infection coming back. Obviously the antibiotic isn’t totally working. What do you do if that’s the case?

    • Ugh. I am so sorry this is going on. I am of course not a doctor and saw that Paul already wrote such brilliant advice, so I’ll just piggy-back to say: 1) Talk to your team, of course (Do you have a good CF clinic? I didn’t have one that I loved until a couple of years ago, and that helped communication enormously), and 2) Ask them to switch it up or really tackle this harder, if what’s being done isn’t working.

      Do you mind if we ask what they’ve been doing to help so far?

      I somehow always grow something funky in my cultures (for the most part over the last ten years), but luckily haven’t had anything major in a year. My last IV antibiotics [for a month, at home] were all the way back in early 2020, and I’ve been able to use just oral antibiotics for the most part, or pretty much nothing since. Sinus surgery in that stretch of time definitely helped that too.

      I really think being “bubbled up” at home as helped a lot, and prevented a lot of germs for myself as a dance teacher who works with kids (especially with everyone now wearing masks). Even so, I tend to grow things? Often, I’ll go on inhaled Tobi for awhile, and that helps, as well. What about you?

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