Cheriz: My life with Cystic Fibrosis

I was lucky enough to try on both the Monarch and AffloVest (portable therapy vests) while I was in the hospital. Luckily, since those two hospital stays I have been doing fairly well healthwise. I caught one virus that knocked me down for a bit, but my immune system fought it off with meds at home. No hospital or IVs this time, whew. I have needed to be healthy lately, considering I have been super busy between work, "Shoes' Appointments (our FosterSon), and trying to plan the Princeton CF Walk. I'm super glad I am so busy with work. I have three closings over the next 3 weeks, YAY!  While I love working and being busy with life, it really has made me realize I need a portable vest. It's hard to get "Shoes" up and ready, while I do meds, and get my work stuff packed up too. So I am beyond thrilled I got to trial both vests.  I think both work really well and both would be effective. However, I really lean personally towards AffloVest in particular. Each one ...

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...

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...

I'd have to say the fact today is "National Caregiver Day" comes at a perfect time! This month is our CrAzY month for our little guy (our FosterSon, we call "Shoes" online)  . But soooo worth it! Becoming a (Foster)Mom was an amazing experience, I had been waiting years to be a "mom". After Andrew and I got married we were very excited to become a family! I feel like I went through all the same emotions as an expecting mother would. I just took classes and filled out lots of paperwork in the process. I nested even, we bought furniture, set up the rooms, and got everything ready for our first placement. We still have one of the (original) three kiddos that came to live with us in August 2017. He has completely stolen our hearts and the hearts of pretty much everyone in our lives who meets him. So while I'm not his Biological mother and he may not live with me forever, he will forever feel like a son in my heart. I love him no less than a biological ...

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 ...