Cheriz: My life with Cystic Fibrosis

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...

I wasn't sure if I wanted to discuss this or should write this post. I had to make a really tough decision this week. I have been struggling with it for months. I finally decided to bite the bullet and do what I needed to... I decided to share because there are probably many others in the same or similar situation. Well, here it is: I took a giant step back in my career.<insert gasp> That's right. I, Cheriz Kunkel, houses fanatic, architecture loving, Realtor, has taken a step away from her Real Estate Career. Let that sink in. NOTE: If you are looking to buy or sell- STILL CONTACT ME. I still make commission on referrals!!!! Plus, I worked with some AMAZING realtors that are friends. So please still reach out!!! Realtor of Year: 2017 I have been a Realtor for 5 years now and I have LOVED being in this industry. Helping people buy & sell, nothing gives me a greater joy than having a 1st time home owner excited to purchase their own HOME! I had always wanted to do R...

Finding ME TIME can be hard, even feel selfish. But, I have learned a lot. It's a bit of a story, let me start back at February 5th... February 5th, it was a cold, dark, stormy night. OOPS! Nevermind. This isn't a murder mystery. Feb 5th: I had Cystic Fibrosis Clinic, my first appointment of the year. Which means mental health screening. Like my usual- I score zero signs of depression and very high on anxiety. This is an accurate description, I have always been fast paced, over thinking, high level control needed, and high anxiety. My anxiety comes from feeling rushed, having too much to do and feeling I'm not accomplishing enough. This is largely thanks to time my medication and CF takes up every single day. I have trouble saying "No" and take on lots of projects at the same time. Right now, I have a career, I'm a fosterparent, have many medical treatments a day, volunteer on 6+ boards and committees for the CFF National Office, and I'm currently organi...

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...

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...

Traveling and keeping costs down is difficult on its own. Adding in all the complications of Cystic Fibrosis makes it THAT much harder to travel. My last travel post was written in February. Check out that  Florida Trip Travel  post! Our 3 day St. Louis trip was by car, so it was a little easier to pack. We try to take as little as we can & pack it the most efficiently we are able. However, with this list (for only 3 day/2 night trip), it's hard: Normal Packed Items:   ( Picture from last trip, we only needed one clothing suitcase this time) 3 days worth of clothes purses/wallet Change of shoes/swimsuit tolietries Entertainment item: Ipod, Book, Magazine Now Add in: about 12 med/pill prescriptions 4 breathing treatment medications per day (2 of which we keep cold) Portable Nebulizer machine (That was a GREAT wedding present. It's compact & runs in the car Vest Therapy Machine (this is a beast to pack- see picture) 4 therapy med cups Ster...