November 7, 2019

CF Clinic

A few days before Azer's 16th birthday, he started to feel like he was getting a lung infection. It wasn't improving with allergy medication. The day before his birthday, he said he was so tired of coughing every few minutes. We made the decision to restart Ceftaz. Within a day, he was feeling so much better. For the course of this inhaled antibiotic, he said his lungs felt very clear. The day after the course ended, Azer seemed to have caught some virus. He didn't have a fever, but he had a bad headache and it seemed overnight, his mucus turned very dark brown.

Luckily, he had clinic this week, so we held off on calling the doctor. He started to feel better, and his mucus color was lighter. His PFTs were down today, but the doctor didn't think oral antibiotics would do much right now, but we may need to restart Ceftaz in a month. 

Because of the issue of Zantac being possibly cancer causing and the fact that it will be harder to get it, the GI doctor switched his prescription to a different antacid pill. Azer has been lifting weights and doing off season conditioning with the baseball team. His appetite has been alright. He says he feels thinner, but he has put on almost 10 lbs of muscle. He also grew taller, and is officially taller than me now! 

It was Cape Day at the Hospital today :)

Some other good news is the doctor said Azer qualifies for Trikafta, the new triple combination therapy approved for people with CF who have at least one copy of the Df508 mutation. To be cleared to take it, he needed to have a liver test to make sure all his levels were normal. When he starts taking it, he will need to have his liver tested every three months. Azer also needs to have an eye exam first, as there is a rare possibly of him getting cataracts on the medication (I learned today that cataracts can happen in children who are on high doses of steroids). 

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