June 3, 2021

CF Clinic and Sweat Test

For about two weeks, Azer has been experiencing symptoms of either a virus or allergies, with worsening CF symptoms. He called his doctor on Monday and she told him to take a high dose of OTC allergy pills. It has helped some, but most of his symptoms are related to his sinuses. He felt well enough to wait for a clinic visit for today.

Today Azer was 10 pounds less than he was when he was discharged from the hospital. He hasn't been able to do all of his night feeds as he his stomach has been filling up with mucus. There weren't too many changes in his routine so far. They are running a virus panel, but will likely put him in steroids for about a week. His lung function was lower than it was when he was in the hospital, but they want to see him back in two weeks to make sure it doesn't start tanking. 

Today, the clinic researcher scheduled Azer for a sweat test. This is a Trikafta study to see if people on Trikafta have a lower salt value in their sweat than before they were on Trikafta. People with CF have an abnormally high amount of salt in their sweat. Azer had this test when he was born to confirm he had CF before his mutations were found. It will be interesting to see if his salt concentration is still high. 

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