E took her first dose of Orkambi this morning! It took just over a month to get it approved by insurance and delivered. I plan to catalog her moods, feelings, and health over the next few months to see if we can tell a difference.
- This morning before she took Orkambi, I kissed E’s forehead and she was as salty as ever! Her sweat test results were 107 and 112, so she’s pretty high on the salt scale. Non-CF is under 40, 40-60 is a gray area, and 60-100 is positive for CF.
- FEV1 Lung function test: At her last CF Clinic appointment, she had a FEV1 of 86, which is a little down from her usual low-mid 90’s. She had a sinus infection at the time, so she did a round of antibiotics that she finished up yesterday. I am positive that her FEV1 will increase, regardless of the Orkambi.
- This afternoon, she has stated that she feels a little tired, but she stayed up late last night, so maybe not related. She says that she hasn’t noticed any unusual feelings yet.
Stay tuned for more updates!