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...

The last quarter 2017 ended a little chaotic. We ended up saying goodbye to two of our foster kiddos in November (we had them for a few months). I was hospitalized. Andrew put in more hours a work. And while we love visiting our family on Christmas. Although I REALLY enjoyed having Santa visit our home for the first time and even more I LOVED spoiling our little guy (I call him "Shoes" on here). He loved our tree and every time we turned it on, he'd say "oooh pretty."  New Year's Eve we enjoyed celebrating with playing board games and pigging out with a couple friends. Every New Year's I make crazy resolutions that I can not keep. How about you? Do you promise yourself the same things every year.  For example... I always would say I'm going to have 100% compliance with medications. Which would be amazing and is something I strive to do all the time. But, realistically with 10 breathing nebs a day and 20+ pills a day..it doesn't always happen. By ...

Gaining weight? Losing Weight? Who doesn't struggle with weight some way or another? Well a big part of Cystic Fibrosis is a struggle with nutrition and weight. I have always struggled to gain weight, I was 45 lbs in 7th grade, and only in the last 5 months has my doctor/care team started feeling satisfied with my weight. whew, only took me 32 years! Slowly over the last year I have been gaining 1-2 lbs between clinic appointments. At my last appointment (just in July) my weight was 110 lbs. Which is pretty much the highest it has ever been. In 2012, I hit 109 briefly. (see side-by side picture)  However, the goal is now around 115-120 (to have a few pounds extra for when I get sick). Doc K suggested I started taking a med to increase my appetite (non-steriod). I agreed, I usually always agree to what my doctors suggest. Doc said he hoped I reach my goal by my next appointment in September. However, after only 1 week on the med I had gained 6.5 pounds (116.5).  He cut my dose down ...