June 25, 2019

Sick CF Clinic Visit

Everything had been going great, and we thought we had the summer to relax a little after doing IV antibiotics. He felt great and sounded clear.

Sunday morning, he suddenly sounded a little congested. Within hours, he spiked a fever and was suddenly coughing up brown/rust colored mucus. The CF doctor on call suggested perhaps it was transiet, but to bring him to the ER if his fever got any higher. He took some ibuprofen and the fever broke later in the evening. Yesteday, he was still coughing up some dark mucus, but seemed to feel better. Today, Azer said his legs don't hurt, but they feel uncomfortable, and he has a headache.

At clinic today they did a virus swab to see if he picked up a virus somewhere. He gained several pounds from last week. His lung function was down slightly. His lung culture from last week found that the Steno is now resistant to Levofloxin. In order to treat it, he will have to be on an inhaled antibiotic for a month. The doctor warned us that the nebulized antibiotic smells like cat pee (awesome). They put in an order for a CT scan for in a few weeks. The doctor said if they tried to do a CT scan right now, radiology wouldn't be able to tell if he has fungus spores or not because of the increased mucus.

It will take some time to receive the inhaled antibiotics since they have to come from a special pharmacy. Azer is currently laying in bed not feeling well...

Update: Azer's virus panel came back negative for all viruses, so his symptoms are from bacteria and/or fungus. He was also told not to use his IPV while he is coughing up brown or red mucus, just in case he is having a slow lung bleed.

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