Cheriz: My life with Cystic Fibrosis

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 ...

Yes, Money, the topic people don't like to talk about. However, I think CF and money obviously affect each other. For instance, we have an out-of-pocket maximum of $4,000 per person (8,000/family).  Luckily Andrew is very healthy, so we don't ever (usually) pay on him (except dental). However, I always will hit my full $4000. It's just a matter of how I will spend it. It doesn't matter whether it is over 6 months over the course of my prescriptions (co-pays) and doctors appointments, or if I pay it all at once with a hospital stay. I have to be prepared, we never know when I will end up on IVs. Plus I go to CF clinic every other month and it costs $200 per visit. I ended up paying my final $1,400 of my out-of-pocket this last week for my hospital stay in October. So I should be 100% covered (since met my out of pocket) until Jan 1, 2018, and then it starts over... How? How can we afford that? We certainly can't take it out a lump sum of paycheck (he gets paid every ...

I have a lot of feelings going on, for many, many, many reasons. It all centers around my health and family. On August 4th we received 3 Foster kiddos, let's call them "Cajun, Barbie, and Shoes" (that is what I refer to them by on FB). It was a very big Roller Coaster ride for the last 3 months. If that isn't enough worry and emotions to have going on, we can throw my hospital stay and lower lung function into the mix. I knew my lower lung function was not a result of the kids (even though many believe it was)... Yes, I was run down from pulling all the "all nighters" with the kiddos- they are adjusting to a new home and its hard on them. BUT, I have been struggling with lung function for the last year now. I was 60% August 2016. I started Orkambi in Sept and 5 weeks later I was in the 20s.. I was admitted (my family did thanksgiving with me at the hospital last year). When I went home I was between 38-45 for months that followed. Not even getting to 50 was ...

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...

It finally happened!!! The Stork came to our house!! We had 3 kids placed with us (on August 4th) Friday afternoon. Luckily, Andrew was able to take off Friday-Monday (Aug 4th-7th) to be home as we all adjust the first few days. He then worked 8th-12th, but we needed him back home more until the kiddos started school. So took a full second week off, because it was really rough ! Big thanks to Culvers & Phil for allowing us time we needed. I love having kids in the house, but it's a lot of appointments for these kiddos at first. . For privacy reasons, I will never use their names or post pictures of them.  I have made fake names for these posts. When they called I was a little nervous to take 3 kids at once, especially since I have Cystic Fibrosis. We had agreed on only 2 originally. But, the lady explained the 3 of them really needed somewhere. Most foster parent's don't take sibling groups and it is really rare to find one that will take three, so our hearts wanted to ...

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 ...

Hey everyone! So I am boldly going where I have not gone before…into the realm of blogging. Now to start off I will say that I am not a writer, so over the course of the next, well rest of my life, bear with me as I share my perspective on our life. To start off I am going to let you all know a little bit about myself, as if my lovely wife hasn't shared that information in the past! I am married to the lovely Cheriz, I am a graduate from the culinary arts program from Joliet Junior College, I love to cook, bake, be outdoors, movies, baseball (Go White Sox!), and I love my job! Recently I transitioned from working at Hy-Vee as the Assistant Meat Manager, a job which I really did enjoy but did not allow me to spend the kind of time I wanted with Cheriz. Also looking into the future and the discussion of fostering kids, it was not the right fit for me and our family. The transition lead me to becoming the General Manager of Culver's, which if you do not know, is a casual dinning r...