Friday, November 11, 2016

CF Clinic

Here's a quick recap of my appointment yesterday.

I started feeling a cold, extra tingly cough coming on Monday that slowly increased throughout the week. I was worried about what that might show for my lung function because my lungs were getting tight. And now this morning I'm feeling worse than I did yesterday, and I'm really looking forward to the weekend to relax, shake extra, and maybe even get in a nap.

I got to my appointment about ten minutes early, but didn't get called back to a room until about half an hour after my appointment time. Oh well, I had time to scroll through FB and relax after the long drive. The took me back to get my weight (134.9lbs) and then to the room. The people who cleaned it were just walking out and the cleaner smell was SO strong. They asked if I wanted to wait in the waiting room for 5 more minutes while it aired out and I definitely said yes. So, five minutes later she brought me back to the room and it was much better. Someone came in to do my vitals (100% O2 level and blood pressure was fine). Then came the PFTs...

I always get a little bit nervous before doing them because it's basically the whole reason I'm there. It guides the rest of my appointment and tells how my lungs are holding up. My last visit was very disappointing when I had a huge drop and was down to 81%. I was hoping to be a few points higher than that today because I had been feeling excellent until this week, so I was worried that my tight lungs would skew the results. My first blow was pretty good, and when I looked at the screen I saw 86%! I said, "Yes!" and then coughed my brains out for a little bit. Once I got everything out, I did the test again and got an 83...not too bad, but I was getting tired and tight. I coughed a bit more until I felt clear again, then went for a third test. Same result - 83. I could tell the last two were lower because of the way I was feeling, so thankfully they took the first test as my best one. :)

So even with this cold beginning, my lung function has gone up at least 5% over the last couple months. I am very happy with that. I think the combination of being healthier, doing all of my treatments, and joining my running group has definitely contributed to that increase. I'm a little worried I'm going to lose a bit of it by the way I'm feeling this morning, but hopefully I'll fight this nasty bug off soon.

Thankfully, I'm at a very healthy weight so I have some back up pounds to help me get over this cold. As a person with CF, it's always been very hard for me to gain weight, and it's always come off very easily, which was not fun! My body is going to be working extra hard over the next few days to fight this cold, which burns more energy and calories. So I'm glad and lucky to have that extra weight, so that if I did lose a few pounds, I'm still within a healthy range. The unfortunate part of being at the heaviest weight I've ever been is my belly. Oh the dreaded CF belly.....I posted about it several years ago when I thought I was at my highest weight (about ten pounds lighter than I am today - thanks Kalydeco). It's very common in the CF community to have a belly. It's the way our bodies are built and I don't think people who are not familiar with CF understand it. Yes, I look pregnant, but it's all CF belly. That's where I gain my weight (and in my face) and I also have a distended belly because of my digestion issues. CF patients frequently have bowel/digestion issues, extra gas and bloating which all shows in that area....just an extra lovely perk of the disease. So for those of you who keep looking at me funny...please stop. :)

Overall, I had a great appointment. The doctor was very please with my increase in weight and lung function. She wants me to up my treatments to help kick this cold or whatever is developing. Hopefully it'll disappear by next weekend when I'm running in the Turkey Trot! I'll go back in January for a follow-up (she said unless the weather is bad, then we can wait til February).

Tuesday, November 8, 2016

Anna - 2 1/4

Anna, Anna, Anna....

You've been keeping me on my toes lately, little one! I know a lot of people don't like the age two, but so far I'm really enjoying it...most days.
  • You're a negotiator! Everything that we say, either you say the opposite, or some different version to try to get your way. If I say that we can read two books before bed, you'll say we can read three. If I say, first we read, then we go to bed - then you'll throw an extra step in there like "read, THEN snack, then bed" or anything to add your little twist onto it...
  • Going along with the above trend - you don't like going to bed! Naps on the weekends are usually fights, and you're getting excellent at coming up with stalling tactics at night. For a while you'd scream that you had to poop. So, I'd bring you to the bathroom where you'd strike up a conversation with me while sitting on the toilet. When I'd tell you it was time to go back to bed, you'd say, "No I pooping." When I'd remind you that we've sat there for five minutes and nothing's come out, you probably don't have to go, you'd try to force yourself while saying, "It too hard! Help me, Mommy!" I hope those days are over, because they sure were frustrating!
  • Along with some challenges though, you sure have some adorable qualities about yourself! You love to be silly! You even said one day in the car, unprovoked, "Hahaha, I so funny!" You really are!
  • You're learning how to play pretend which is so fun. You're getting more interactive and actually playing with your toys the way they're intended to be used. You make play food, have a picnic with your babies, change their diapers, pretend that they're crying or hungry, you "make" things out of your blocks, make a zoo with your animals, etc. It's so fun listening to you play and the things you come up with. Just last night you put a blanket across your shoulders and started running saying "I a superhero! I super Anna!" 
  • Potty training is going....some days you have no accidents at all, and other days you'll have up to three. One day at Grandma's you told Daddy, "I not poop in my undies anymore!" and I don't think you have. Your problem is not wanting to stop what you're doing to go pee...which I'm sure is common for this age. Or you have to take everything off before you go, and you can't hold it that long. You also had a week when you wet the bed 3-4 times, so that was a bit frustrating. We're trying to reward you with your Halloween candy and remind you more often, eventually you'll get it.
  • You're so smart :) I know every mom probably thinks their child is so smart, but I really am impressed with how quickly you absorb things. You love the show Super Why and I'm totally okay with you watching it because you're learning your letters faster from it than me! I think you're up to about ten capital letters and it makes me so proud :)
  • We have preschool orientation in January to get you on the list for school in the fall. I'm so excited for you to go to school because I think you'll do wonderful and I'm excited to see how much you grow up!
  • You're becoming a better eater, you love to be outside, you like to read, you still want me to do everything for you instead of Daddy, you love to color, and of course, be silly! :-)

Sunday, October 2, 2016

A/C, Cipro & No Bo.

It's been a couple of weeks since having Fredrich in our classroom, and he seriously has been a life-saver! The last two weeks have been unbearably hot and having the A/C unit in my room has helped a ton with removal of humidity! It typically kept the temperature somewhere between 73-77*F which was really nice, but the amount of humidity in the hallways and other classrooms compared to mine was SO noticeable, and it really made a difference in the ease to breathe! It has cooled off this week, so we're giving Fredrich a break since he's worked so hard lately. :) My class has been SO good about having the air. They don't really know why I have it, but we've discussed not bragging about it and especially not complaining how hot it is when we go into the hallway or other rooms in the school, because we're very fortunate to have A/C. I did get Fredrich a few days before our Open House, so the families who came were able to see/feel the difference. Many parents just mentioned how cool it was, but not many really asked why. I did have this disclaimer on the board:

One parent read it and said, "Wow, you have CF?! I had no idea! I couldn't tell by looking at you. Some of the people I see (she's a surgical technician) are in bad shape." She was so sweet about it, and we talked about my health for a few minutes. It was a nice way to connect with her on a different level than just teacher/parent.
I don't like to wear a sign on my forehead saying, "I have CF", but at the same time, I don't mind share when it comes up. I figured the parents would be wondering why only our class had air and ask, but they really didn't! I think they were so overwhelmed by the heat they just wanted to get out of there! :)

A couple weeks ago, I also started two things: Cipro and "No Bo". I wasn't feeling terrible, but I wasn't feeling my greatest either. With the week of heat before getting A/C in my room, combined with my lower lung function results from my last doctor visit, I could feel it all catching up to me. I was getting exhausted quickly, so I realized I just needed a boost. I got in contact with my doctor and nurse and asked for a round of Cipro to help me out of this funk. Between that and the air in my classroom, I could slowly feel my energy coming back and I was starting to feel back to normal.

Unfortunately, I was on Cipro when we went camping, and completely forgot about the sun sensitivity, so I ended up with sun poisoning on top of my head (where my part is) and on my legs. Thankfully it didn't hurt too bad on my legs, it just looked bad. I was able to keep myself in the shade for the most part during recess duty and avoid it getting worse or spreading.

And finally - What is No Bo, you ask?! It's a running group called "No Boundaries" through a local bike and fitness shop. It's a 10-week program that helps runners of all levels. I'm in No Boundaries One, so our end goal "graduation" is the Turkey Trot in November. I decided to join this group with a mom-friend I met through Baby Talk, and I even got my next door neighbor to join with us, too! I really wanted to get myself back into an exercise routine, but I was struggling to motivate myself and hold myself accountable. With No Bo, I have the routine and accountability that I need. We have group work outs on Tuesdays and Saturdays, with homework in between. I just finished week three of the program and I can already notice a difference!

Not only can I get through the warm-up without my legs feeling like they're on fire, but I decided to run a 5K with Tim and some friends today! Chris, his girlfriend, Sammy, Tim, Chris's family, and I walked/ran a 5K benefiting CASA of Will County. Chris's sister is doing a marketing internship with their organization, so we helped her out by joining the race. Since signing up for No Bo, I thought this would be the perfect opportunity to get my "homework" in for the day by doing some walk/run intervals. Thankfully, I had Sammy there to motivate the heck out of me and I was able to run almost the entire first mile (~12 minutes) without stopping! That's a huge improvement from where I was three weeks ago! I'd guess we probably ran about 2/3rds of the race, with some walking in between. But I know I would have walked a whole lot more if Sammy wasn't there with me! Of course Tim flew right by us - even pushing Anna in the stroller - and beat us by about six minutes! But hey....we beat Chris! :)

Anna even (somewhat) participated in the Kiddie Run afterward. She was a little intimidated by all the other kids running, and the adults yelling cheering her on, but she tried!
This was before the Kiddie Run started!
She was at the bottom of her age group (2-6 year olds)
I'm really looking forward to the Turkey Trot in November! If I could almost run the whole 5K today, I'm positive I'll be able to run the entire thing by the middle of November! I've been run/walking two-three days a week and I love the way it's helping me clear my lungs. I'm really looking forward to my next doctor's appointment (which isn't until November) because I'll have been in this program for two months, completed a round of Cipro and I'm starting Cayston tomorrow. I hope the combination of treatments and exercise will really help me get my lung function back up where it should be!

Tuesday, September 13, 2016

Meet Fredrich

Please help me welcome the newest member of my classroom: Fredrich
(or as some students suggest: Jimmy John Jones, Burrito, Chimichanga, or Aries...we might have to hold a vote later)

This is our new "spot cooler" - aka: air conditioner, that was installed last night and surprised me this morning!!!! I have to say I was very, very doubtful that this would ever happen, but I am SO happy and thankful! Everyone at work was so surprised, too! The custodian even said he was shocked and that I proved him wrong! :) So I apologize to my coworkers, I'm not keeping my door shut to keep you out, but I'm going to keep my cool air in as long as I can!

It was very difficult for me to put in Americans with Disabilities Act paperwork because I felt like I was putting a huge label on my forehead marked "disabled", but after the summer of mold and the huge drop in my lung function, I had to do something. I want to teach for as long as I possibly can, and Freddy is going to make my classroom environment so much healthier for me, and for my students.

I cannot thank my principal enough for helping me through this process, backing me up on this decision, and following through with everyone. I also am thankful to Tim for encouraging me to do this and supporting me through my extremely frustrating summer of mold. And of course, my school district for providing this accommodation for me to remain in the building I love and to be able to teach in a much healthier environment!

Saturday, August 27, 2016

CF In Real Life

*Raw feelings ahead:

A couple weeks ago, I had my routine clinic appointment in Chicago. The appointment previous, at the end of April, was probably one of my best appointments I've had in many, many years. My appointment a couple weeks ago was not even close. 

I went in expecting to be in the high 80s, maybe still 90, because I was just beginning Cayston which always makes me cough a bit more when I start it. I knew my weight would be up a couple pounds because I hadn't really exercised all summer and I could tell things weren't fitting the same. 

First came the scale, and boy was I surprised - 132.4lbs! What?! That's more than I ever weighed, even when I was pregnant with Anna. No wonder my clothes weren't fitting...Then came vitals, which were fine. I felt like I had to wait forever to get my PFTs done. I saw the nurse first, quickly, who I told that I was feeling really well all summer and expected some good numbers. She mentioned that my insurance was being picky about me getting an Afflo-Vest because they wanted proof that what I have now isn't working, so she was going to "add a note to the bottom of my papers today" saying my numbers weren't the best and recommend that I get it. We both giggled a bit at being rebels, haha, but she knew I'd been asking for one for a long time, so she was trying to help me out.

Then finally the PFT machine comes rolling in. I stand, plug my nose with my fingers, close my eyes and focus on my breathing. I give my biggest, best puff of air and blow as long as I can. When she tells me to take a deep breath in, I do, take the mouth piece out and stare at the screen - FEV1: 81%. That can't be right. So I cough a few times, give them a sputum sample, make sure my airways are nice a clear for another test because that score just cannot be right. I tried even harder on the next one and ended up with the same sad number, I was so confused! What was worrying me was that I felt fine. You'd think if your lung function took an 11% hit, you'd feel pretty crappy, but I didn't feel a thing. I just got done telling the nurse how I'd been feeling great all summer. The RT had me do another test, but she hit the button at the end too soon, so that one wasn't correct. She asked me to do one more. I coughed out everything I could before doing it, to make sure nothing got in my way....same, if not a little lower (can't remember for sure) because I was exhausted. 

I wanted to cry. How could my lung function go down so much in so little time without me realizing it?? I didn't know what to say. I had no idea what my doctor was going to say or how she was going to react. Thankfully, she was so level-headed and calm. I told her how I just started my Cayston and wondered if that was it. Then I told her about my classroom...

See, my school doesn't have air conditioning. It also has carpet everywhere. Over the summer, our custodian cleans all the carpets in the building. He uses as many fans as he can find to try to help the carpets dry quicker, but between the heat, humidity and moisture, almost always some mold grows in some or all of the classrooms. This summer, it happened to be only in my room, and it was EVERYWHERE. I discovered it when I went into school over the summer to drop off a few things in my classroom. It was covering all of my bulletin boards (which I covered in fabric last summer), on my books, shelves, desks, etc. I took pictures to show my principal and got out of there. I was so frustrated! I couldn't work in that environment! 
After talking with Tim, we decided that it needed to be taken care of, and no one s really doing anything about it. So Tim bought me a respirator and we sent Anna to Grandma's one day the next week. Wearing my respirator, I tore down all ten of my bulletin boards' fabric and borders and threw them away. Apparently wearing a respirator finally got the custodians attention and he called his boss to try to help me out. He got me a new dehumidifier for my room and used an entire gallon of mold killer to spray every surface in my classroom (I even asked him to spray my books). He decided to keep the windows shut, shades drawn, and lights on for days to make sure the mold didn't grow back. 
Fast forward to the next week no there was no sign of mold growing back, so I went back in for an entire day in the heat and redid all ten of my bulletin boards with the help of one of my teacher friends. 

This was two days before my clinic appointment. When I told my doctor about all of this, she said, "Don't ever do that again." I felt awful, but I knew no one else was going to do it for me. She said that even with a respirator, it still wasn't good for me to be in there. We wondered together if that could have had such an impact on my lungs. It was obviously airborne because the bulletin boards were never wet, so the mold had to come from the air. My doctor said she'd check my sputum culture for mold, told me to increase my treatments as much as possible before school started in a few days, and talked about writing a letter to get me an air conditioner in my classroom. That was it. She wasn't putting me on antibiotics or anything extra because I was already on Cayston and she said my graph looked proportional despite my numbers being low. It was kind of a mystery. She wanted to see me back sooner than three months to see if my numbers stayed low, or if it was just a fluke.

That whole night and the next day I was so, so defeated. I was confused. Should I go back to work? Is it worth risking my health to do my job? I'm too young to stop working! School starts in three days, how am I going to find another job in an air conditioned building? What do I tell my boss? I had no idea what to do or if I should even go back in my school. My doctor and I texted back and forth the next couple days, and she agreed to write a letter to my district to try to get A/C installed in my classroom.

That brings us to today... Yesterday was the eighth day of school and all of my ADA paperwork has been submitted to HR to try to get me an A/C in my classroom. Unfortunately being in an older school building, I hear the eletrical isn't enough to hold one, but we'll see. I have a feeling they'll make their decision by October when it's not relavant anymore....or try to send me to another building which I will not do. 
I've been feeling okay the last couple weeks. Not the best, but not awful. It sucks working in the heat, but we're all in the same boat at my school, so I feel bad complaining. I absolutely HATE using my CF as a crutch/excuse. I hated filling out ADA (Americans with Disabilities Act) paperwork. CF is not a disability. I hated writing that I have limitations because of CF. Unfortunately, I have to realize that I do have limitations. I can't subject these lungs to the heat and humidity if I want to keep them in tip top shape. I have to keep myself healthy to be the best teacher, mom, and wife that I want to be.

We'll see what the district decides. ***Oh, and my culture did NOT show any mold in my lungs, so that's good. Even though I've been breathing it in, its not not making a new home in my sticky mucus-filled lungs! I'm almost at the end of my Cayston cycle and still feeling just okay, so I might be asking for some Cipro in a couple weeks to give me that extra boost. I'm also planning on joining a ten-week running club with a friend, so that should really help keep these airbags moving. 

I'll keep you all posted. High-five for you for reading all the way til the end... :-)
PS - My class has only 14 students this year. It. Is. Amazing!

Tuesday, August 16, 2016

730 Days

Today (when I wrote this) you are TWO! I cannot believe that is has been two whole years since you came into this world. :)

You are such a happy and silly little girl! You've grown a tremendous amount in this last year - one to two has been so much more fun (and faster!) that zero to one! You're now 33" tall and a whopping 21lbs 9oz.

Small, but mighty!
Things you love:
  • Your babies (and after your birthday party, you have at least seven)
  • Daniel Tiger & Super Why
  • Being outside
  • Liam (and all of your cousins, but mostly Liam!)
  • Singing songs with us
  • Swimming/anything with water
  • Foods: Chinese (especially the crab rangoon), beans, tomatoes, PB&J, strawberries,  
  • Coloring, especially with markers

Things you've learned this year:
  • How to use the potty!!!! You decided to potty train about two weeks before your second birthday. You were using a diaper at night for a few days, but quickly refused and demanded undies. You've been doing an excellent job keeping them dry at night! You've quickly learned how to go all on your own, even on the big potty, we're SO proud of you!
  • Talking - you're talking so much! You're starting to put 4-6 words together at a time, but  sometimes you still like to talk like a caveman. Your receptive language is amazing, when you want it to definitely have your Daddy's ignoring capabilities :)
  • Vocabulary: You've learned all of your colors; you're very close to being able to sing your ABCs (you get messed up at L, M, N, O, P);  you can identify letters Aa, Oo, Ss, Nn and sometimes W/M; you try to count up into the 20s, sometimes skipping some numbers.
  • Independence: "Anna do it" & "Me do it" have been very frequent phrases in this house and most of the time it's music to my ears *unless we are on a time crunch!* I love that you want to do things yourself. Isn't that my whole purpose as a parent - to raise an independent, self-sufficient productive member of society? Now we've got a ways to go on the self-sufficient & productive part, but you're well on your way little lady, and it makes us so proud!
  • How to go up & down stairs independently
  • You're learning how to dress & undress yourself - bottoms are much easier for you than tops. You can also put most of your shoes on all by yourself, and 90% of the time they're on the correct feet.
  • Negotiating: You and I sometimes butt heads when I tell you to do something you don't want to do. For example, when I say "get your feet down" you reply with "one foot". Or if I tell you that you can bring one baby with when we go somewhere, you say "two babies". Along with this, you've also learned how to take a time-out....which you also try to negotiate by sitting on the opposite all where I sit keep me on my toes, little one :)

Things you dislike:
  • Not getting your way.....surprise, surprise
  • Onions - even though you insist on taking my onion rings & just eat the outside, of course 
  • When your babies aren't in bed with you and tucked in correctly
  • When you're not tucked into bed correctly (it has to be covering your feet & all the way up to your chin) - OCD much?!

I love your silly, imaginative and independent personality, and I'm so excited to watch it develop even more over the next year! :-)

Love you so much!! ~Mommy

Friday, August 5, 2016

I'm Still Here!

I haven't posted a blog in over two months...oops! I'm kind of glad though because it means I've really been too busy enjoying my summer! :)

Unfortunately, there's only one more week of summer vacation left for this working mama. I go back to work on August 15th and the students come back on the 17th. But I'm getting ahead of must be wondering what I've been doing all summer...

Anna and I have been keeping busy! We have been trying to get out and do something everyday. We've spent many hours at two local libraries, completing the Summer Reading Program at each of them. We also started "1,000 Books Before Kindergarten" through one of the libraries and are currently on 188 since starting at the end of May. (I wish I would have learned about it sooner because I'm pretty sure we'd be close to done by now!) We've attended many play groups and made some new friends. We've been in many, many pools and Anna is becoming quite a confident little fish.

At the end of June we took our first family vacation with Tim's sisters and their families, and Tim's Aunt & Uncle. It was SO fun!! It was our first family vacation, and Tim & I's first vacation since our honeymoon almost six years ago.

July flew by filled with more trips to the libraries, pools, parks, museums and play groups. And now, unbelievably, it's August already! August has mixed emotions for me. It's a little sad because it's the end of my time with Anna, but the excitement of starting a new school year balances it out a little. August is also an exciting time because we celebrate Anna's birthday! I cannot believe she is going to be TWO next week! She's grown up and changed so much just this summer! I'll be doing her two year post next week, so I'm not going to put too much in here, except to say that she is potty trained!! I'm so proud of her and I love the little person she's growing up to be!

Health-wise I've been feeling really good this summer. I haven't had any chest infections. I'm just starting up my round of Cayston today, so that should get my lungs in tip top shape for my CF appointment next week and the beginning of the school year. I definitely haven't exercised as much as I could/should have this summer, so there's always that to improve on, otherwise things are going really well here.

Well, that's all for now. We're really busy at home right now preparing for Anna's "blue birthday" party tomorrow! :)

Monday, May 30, 2016

X-Rays. Compliance. Kalydeco.

On the left: Chest x-ray from January 2013             On the right: Chest x-ray from January 2016
What's the first thing you notice? Be honest...
Fat! And that's a good thing for a CFer. Let me fill you in on the huge difference in these photos.
January 2013 - I was half way through my first year of teaching. I weighed 109lbs, although my lung function was 88% at the time, it wasn't consistently that high. I was showing signs of pre-diabetes, losing weight quickly and not compliant with my treatments. This x-ray is pretty good for a CF adult (24 then). Lungs are pretty clear with mild issues in the upper area of my right lower lobe.
January 2016 - I was into my fourth year of teaching, on Kalydeco for a little over two years, a mommy, 124lbs, and a steady lung function of 88%. I had a normal A1C (aka: no diabetes!) and had been compliant with my treatments for a couple years now. The lung damage was very similar, which is key. Typically, adults with CF slowly lose lung function over years, but that fact that my lung function is even better (now) is quite amazing.
There are two giant factors: Kalydeco and compliance.
When Tim and I got married and talked about starting a family, I became very serious about my health. I didn't want to sit back and let CF slowly destroy my body as it was. I finally took control and started being complaint with all of my medications and treatments. It was only fair for my husband, and then daughter. To this day, I remain complaint with my treatments because they're what keep me alive.
Looking back at blog posts from right before I began taking Kalydeco, I remember that I really didn't want to start it. I didn't want to rely on another drug to keep me healthy. But after realizing, 'what's another pill?!', I figured I'd give it a go. I started Kalydeco August 30, 2013. My lung function the month prior was 77% and I weighed 109lbs. Today, my lung function is 92% and my weight is typically between 124-127lbs. That means, since beginning Kalydeco 2 1/2 years ago my lung function has gone up about 15% and I've gained 15-20lbs! Now if that's not amazing, I don't know what is!! From two little blue pills twice a day!
I plan to continue taking those little blue pills and doing ALL of my treatments every single day...well, until there's a cure!