Here's a little Great Strides - Year 16 Update!
Like many individuals with CF, Kyra recently began a new drug treatment - Trikafta. Research was done by Vertex Pharma in conjunction with the CFF, and the results of the clinical studies were very positive. The drug was FDA approved last fall and Kyra was able to start in December. It is donations from our family and friends that helped to make this new treatment possible, and it's big - Trikafta has already and will continue to significantly improve the lives of individuals with CF.
Kyra continues to take about 25 pills/day, and she is continuing to manage the many medications herself. Every Sunday she fills her weekly pill box, and does a great job of remembering to take them at the appropriate timing. Kyra is much less compliant with her vest treatments than her meds, but with exercise (mainly basketball) she has been able to keep her lung function up and generally, stay quite healthy. Her pulmonolgist has a hard time getting too upset with her when her lung function is so high and her overall health is so great! Hopefully she continues to enjoy exercise because we believe that is what keeps her lungs so healthy!
She has now been quarantined for about a month due to the coronavirus pandemic. She is keeping busy with school and exercising, but does miss spending time with her friends, even going to school! And, like me she also misses wandering around aimlessly at Target. We are hopeful that we can successfully keep Kyra (and ourselves) coronavirus free, but we also believe that she is strong and healthy enough to overcome an infection if she were to catch it. Fingers crossed!