Saturday, July 24, 2010


Only a week-and-a-half ago, I was thinking how CF had become more of a background element in our family's life--still present, but definitely not something that was at the forefront. Then, a day before our vacation to Portland, OR, we got a call from our CF Nurse Practitioner. Peter's latest throat culture grew Pseudomonas.

Here's a few facts about this scary bacteria, Pseudomonas aeruginosa (PA):
  • A particularly aggressive and hard-to-eradicate bacteria
  • Thrives in the lungs, sinuses, and other wet environments
  • Loves mucus, attaches to mucus, prompts the creation of more mucus
  • Is the leading cause of lung disease in CF patients
  • Infects about 80% of CF patients
You can read more about Pseudo (and see a picture of a culture with PA) here:

Fortunately, Peter has a "rare" (spotty) and "non-mucoid" (doesn't grow as aggressively) version of Pseudo, and the throat culture showed that Peter's PA was sensitive to the entire panel of drugs used to treat it. Thanks to the Cystic Fibrosis Foundation's research efforts, we have drugs to combat Pseudomonas (notice the red "anti-infective" ones):

For the next month, Peter is on 2 nebulized treatments of TOBI a day (yikes, $3400 worth of medication in my refrigerator) that has to be done after his Vest treatment, not during the chest physiotherapy like his other neb medications. TOBI has to "sit" on the lungs to work correctly, so doing it during the Vest would be counterproductive.

He's also taking an oral antibiotic, 2 daily doses of Cipro (also use to treat Anthrax, yes, Anthrax) for two weeks. Sadly, that means that Peter's treatments have become a 2.5 to 3 hour affair everyday. Ughhh. But the alternative is worse. So, after a bit of phone/pharmacy/insurance gymnastics we got the TOBI and Cipro from a retail pharmacy in Portland and spent a chunk of time each day in the hotel room doing therapies because CF doesn't take a vacation even when we do. (By the way, we still had a great time on vacation. Portland is gorgeous!)

Photos by me (the top two--I think--though I'm not exactly sure if I had the camera in hand for these) and my fabulous friend Kelita Flatman, a teen photographer I've been mentoring lately.

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