Cheriz: My life with Cystic Fibrosis

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...

Hi everyone! Sorry, we haven't had a chance to blog much since we got some foster kiddos! If you are new, make sure you check out the last few posts.  Trying to make sure the kiddos make it to all their appointments and are learning as much as they can is very important. So yes, I put 100% of myself into working hard for my kids. What did that mean? Well... I did all my nebs and oral pills, but honestly struggled to do my vest, exercise, eat, or sleep much over the last 2 months. No vest, no sleep, no exercise, and honestly only eating 1 meal a day... I knew I'd take a toll on my body. But, I knew for the first 2 months I had to do what was needed. Both or safety reasons for my kiddos and me! I had clinic at the beginning of September... Weight was down from 116 to 112 and lung function down from 60 to 40. However, I pleasantly supported by my whole care team in my decision to stand by the kids. However, we needed a game plan to make sure I didn't jeopardize my health. I ha...