Cheriz: My life with Cystic Fibrosis

Yes, I have Cystic Fibrosis. Yes, It's mostly known for the damage done to our lungs. But, it's not JUST a LUNG DISEASE. To be honest, when I was younger I had more serious GI (stomach) issues than serious lung issues. I've had many, many surgeries where part of my intestines were removed (I only have 60-70% of my intestines left). I have/had liver struggles, bone/joint issues, reproductive issues, and more. Also, I have mild cerebral palsy ( diagnosed at age 3). For my CP, I did lots of physical therapy, wore a leg brace for 10+ years, and see an eye specialist. I had surgery on both my eyes to cut and tightened my eye muscles a couple years ago. So, yes... while overall I struggle the most with my lungs, it changes day- to-day. Some days I do my meds and have no issues. Some days I have stomach issues, some days my joints hurt, sometimes my allergies are causing me to cough a lot. It just depends. One issue I have never "officially" had diagnosed is my Arthri...

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 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...

I don't really like to make New Year resolutions. My resolutions were always something really important like being 100% compliant with nebulizers. That's a lot of pressure when you do 10 nebulizers, 3 airway clearances and take over 50+ pills a day. If I go out of town and forget my pulmozyme, It ruins my prefect streak. While they are simple mistakes, once I mess up, I have lost that competitive streak I had and it's hard to stay on track. So I decided this year just to examine where I am at now and take it a day at a time. My doctor explained my lung function in a great way that emphasizes it's importance. I have at the most 65% lung function (due to permanent scarring & damage). Which, it's sad to realize at my healthiest, I'm still missing 35% (over 1/2 of a lung). But the lowest I can go is really 20% and I start preparing for a transplant at 30%, so 30% is somewhere I don't want to be EVER! So if I have between 65-25% range from best to well (w...

I haven't really felt up to blogging or doing anything since I got sick. I have been having a few breathing problems and more asthma attacks the last two weeks. I had my regular Cystic Fibrosis Clinic check up on Tuesday of last week. I knew it wouldn't be great, but I had no idea how bad it really was... At clinic we found out my lung function dropped majorly from my "baseline" of 58% to around 38%.  My Respiratory therapist responded "Dang, that's transplant range, we gotta get those numbers up." It's scary to think one sickness, one medication and my lung function can go from 58% to 30s. Where I struggle to breathe and could be listed for a transplant. But I have faith, hope, and trust. This is why. My doctor(s) at the CF Center are very proactive! My doctor told me I had a couple options: 1. be admitted 2. Stop Orkambi 3. Keep doing Orkambi, but switch up some of my meds at home and call in a few days for update Of course... I decided...

Too be honest, sharing about Cystic Fibrosis can be tough in the first place. I always try to be open about my CF though. I think it makes things easier in the long run. No weird looks when coughing, or comments about being contagious. I don't want sympathy, just for people to be aware. Plus, the more people know about CF, the more awareness for the CF Cause.  How to tell people??? Well I don't say "Hi, I'm Cheriz and I have CF".... That sounds so drone-like and weird. I usually try to tie it into conversation. By saying something about my volunteering for the CF Foundation and follow that up with "because I have CF." I also tell people to feel free to tell others if they wonder why I cough, etc. The weird part is now that I'm getting older and my CF is becoming increasingly more difficult. While most of my family members and friends could rattle off every surgery, my current lung function, weight, and secondary problems, in a second. I feel mo...

Secondary Medical Problems: Well, it's been a while since I blogged. Something EXCITING though is we moved into our new home just under a month ago. By moved in... I mean Andrew and I started living there without our furniture. We finally got our furniture and our INTERNET a few days ago.  We had to do some work in it first, before we moved everything over.  I also had 3 Real Estate closings in the last month, plus other medical problems. t has been a busy time (with no internet), so sorry about the gap.  :-) Update: Basically I'm just waiting for everything. I'm waiting for my eye surgery on September 14th. I'm waiting for insurance to pre-authorize, approve, and move forward with the Orkambi.  I'll wait until after my surgery to start Orkambi, since the side effects can be pretty horrible. But I will discuss my going on Orkambi once I have the "thumbs up" from insurance. I'm excited to get my eye fixed finally and I'm very excited to see i...

"You are so lucky you are so skinny" "Must be nice to eat anything you want" "Wish I could keep my weight down like you" "You're so tiny and childlike" "You could be in high school still" "Wow you're thirty, you look 16" or hearing these replies: When I say I need to gain weight , "huh, Give you some of mine" Always hearing I'm "cute or adorable," never hearing I'm "beautiful or sexy". All these things can really hurt my feelings. But let me explain further where this post is coming from. Today a friend shared on Facebook about how some posts are body shaming & lots of people don't realize it.  I hear lots of people say things like " I'm not afraid to eat a hamburger. A man likes some curves." Or I hear remarks how all people who are size 0-2 are unrealistic and anorexic, etc. I understand a lot of times people may mean to help boost...

All the Updates: Well, to update you from my Colistin problems last week. No, I never got my Colistin. They still couldn't give me an update. They said there was nobody there that I could talk to that would be able to solve it. They said they would contact me when it was fixed, that was on Monday. I wasn't going to hold my breath. I called Doc Monday and explained to him that Colistin sounds like it wasn't going to happen and I was just getting worse. He called Tuesday saying they could see me first thing on Wednesday. Wednesday (yesterday) was my 31st Birthday, BUT I just want to get better. Being healthy for Andrew, being a future mom (foster/adoption), and being around for family and friends is WAY more important than whether I have a "Good" Birthday. So I agreed. (I posted a Vlog on YouTube about it). I was frustrated to drive all the way up there (took 4.25 hours) then we'd have to drive another hour to the hospital if admitted. Getting up at 4:00 a...

I Spy With Silly Eye: "Silly eye" is an understatement. As you all know (probably) I have mild cerebral palsy, which affects my right side.  I was diagnosed at around age 2-3. I had glasses since I was a year old, but it wasn't until I started walking funny on the outside of my right foot and talking out of one side of my mouth that my parents knew anything was wrong. After many years of physical therapy, barely anyone could tell I even have CP. I said goodbye to my leg brace at age 10, goodbye to glasses at 12 years old, and kept getting stronger! (picture: doing physical therapy at home) I was very fortunate to have such a mild case. I still catch myself holding my arm stiff (t-rex style as I call it) and I have trouble with tying shoes, cutting food, doing buttons, etc. Sometimes my right hand just drops items, and overall my right side is super weak. I try very hard to work out and keep it's strength up, and overall it has gone pretty well.  I have no r...

Weekend Luck: Doctor's offices are open Monday through Friday. Yet I always start feeling sick on Fridays. Luckily, I don't get "sick" too often. Which is pretty lucky considering my pathetic immune system. My immune system can't fight anything and even a simple cold could become more serious and life threatening. For example:  I had to break down and call Doc's after office hours (this morning) to figure out what to do, thanks to a simple cold sore, AGAIN! Yep, you heard me right. Again, thanks to a cold sore. Not sure if you remember in 2013. In 2013:  I had a cold sore that turned my  mouth and lips full of cankers, sore, and lesions. My jaw/mouth was so swollen that I couldn;t talk (which is really funny if you know me, since I gab all the time) or barely swallow liquid. My throat and tongue covered in bacteria and fungi (my tongue was covered in pure white - it was thrush). My fever reached 104 and my pulsox dropped into 80s, Andrew took me to...

Hit a Snag: Well, unfortunately we cancelled my doc's appointment for today. So I do not have an update on my lung function for you. I know, sounds crazy to cancel right? Actually, it was the smart thing to do. Considering our plan was for me to take prednisone for 6-7 days and do a Collistin Nebulizer treatment 3 x a day didn't work out too well. I got the prednisone filled right away, I had the pharmacy and Doc office receive and set up my new nebulizer on Monday/ Tuesday. However, the insurance needed a prior authorization and  they have a standard 15 days to decide if I get the new nebulizer. Since I'm already taking Cayston this month (another antibiotic nebulizer) they will prolly (yes, I always say & type prolly) deny it and we will have to fight it, etc. This is why it's hard to get lung function back after being sick. It can take so long to get the meds and treatments that we have twice as much work once we do, and sometimes its already permanently dama...

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh...

Thankful for Halloween: One picture can say a lot. For example:  This picture (besides saying I just woke up) Also, say a few other things:  I have lung problems (Cystic Fibrosis) since I'm doing a vest treatment & nebulizer, It's Halloween or I have eye problems. Well, actually it's all three! I'm thankful it's Halloween, because it makes my eye patch blend in more. Why am I wearing an eye patch? I don't wear glasses or contacts, right.... Did you know that I did have glasses for many years. I had such bad eye sight that as a baby that I got my first set of (thick) glasses by 6 months old.  I had bifocals by the age of three. However, the eye problems were corrected (sort of) by age 11 and I could ditch the glasses.  Only in the last year have I noticed them coming back. Lately, they have been pretty bad. I've hit more curbs while driving and stopped driving at night all together.I keep running into things and tripping, I'm usually ac...

My Much Needed Health Rehab: As you know, I've had a lot of health issues in the last year. Liver being elevated, pancreas not working as well, which resulted with me now being on a permanent low-fat, therefore, low-cal diet. So of course, I'm losing weight. But also, I'm struggling breathing wise more. My lung function has been fluctuating between 48-60 since 2012. However, I've have really struggled since last year to keep it at mid 50s. I didn't respond to IV antibiotics in Jan-March this year. I'm now currently at low 50s. Which would be okay, if I couldn't tell the difference it has made on my body. Because of my lower lung function and energy, I haven't been able to do simple things like carry laundry or groceries.  As I've talked about in a previous blog here , I'm wanting to get back to my 60% lung function, 110 lb self, the girl that had energy to work part time, do theatre at night, and still come home to jog 1 mile before bed. I w...

30th Bday Party Bowling for CF: Thank you to everyone who made this 30th Birthday Party happen! It was sooo much fun and we raised $400 for a great cause! The $400 is going towards Team CF2's Princeton Great Strides Goal! The party was from 7pm and lasted until 10pm. Which was perfect, by 10pm I was exhausted anyway. But it was so worth it. I actually bowled a decent game the first round. I had Andrew bowl my 2nd game though, since I was so tired. I got to spend some time catching up with close friends & seeing some family. Plus, I bowled I the first Ball of the night AND got A STRIKE! That's right me, Miss I-Never-Get-Over-70-If-That!!!! The whole night worked out really well,  I split up the 28 bowlers onto 4 lanes! I had reserved and planned on 30, whew. We had around 10 people who came to visit but didn't bowl and they all still donated $10 or more too. Hope the cake I bought was yummy enough for $10!  lol. But really, it was exactly what I pictured for my 30th an...