Sunday, March 17, 2019

My Thoughts on Five Feet Apart

**This blog post may contain some spoilers on the movie, so if you're planning to see it, I'd come back and read this after.**

Yesterday evening I went to see the new movie Five Feet Apart with some past coworkers and friends (all knew about me having CF). After the movie, we had an awesome conversation about CF. That's EXACTLY what I was hoping this movie would do -- pique people's curiosity about CF. The more they know, the more they'll (hopefully) be inclined to spread the word and help us raise funds to help find a CURE.

As a member of the CF community, I was really looking forward to seeing a movie specifically about Cystic Fibrosis. There have been many different opinions from people in the CF community about this movie, just like there would be different opinions from anyone about anything. Not CFer feels the same way about everything - everyone is entitled to their own opinion.

I was really excited about getting more awareness for Cystic Fibrosis from this movie. CF is not a very common disease, with only about 30,000 people diagnosed in the United States and about 70,000 total world-wide. Cystic Fibrosis has no cure and affects almost every patient differently, which is a major hurdle for researchers and scientists because they can't create a "one size fits all" medication for everyone.


Before going to see the movie, I was expecting it to be a love story about two people with CF who couldn't come within five feet (six feet is the CF Foundation guidelines) of each other for the fear of passing their bacteria to one another. I assumed it would be focused more on their love story, with a little mention of CF throughout the movie. I assumed that one of the main characters would die at the end of the movie and that I'd be an emotional basket-case throughout the whole thing.

I was pleasantly surprised throughout the movie because there was a huge focus on CF. I felt the movie did an excellent job explaining typical CF treatments like the Vest, nebulizers, enzymes, countless pills/vitamins, using a g-tube, IV antibiotics and oxygen. They even showed one of the main characters cough and spit out mucus (you could hear the eww from the teenagers in the theater) as I thought to myself story of my life. The actress who played Stella was eerily similar to Claire Wineland, but in a good way. I felt that the actors/actress displayed what it's like to have CF pretty accurately. There were many lines throughout the movie that really hit home for me, too, especially when one of the characters, Poe, was talking about CF being a burden on our significant others (how they're just waiting for us to die -- I can't remember exactly what it was anymore & it's driving me crazy). Either way, even though I am not nearly as sick as the characters in this movie, I have had several friends pass away from CF and know that the actors' portrayal was very accurate.

Of course there were several "Hollywood" moments throughout the movie that were added for dramatic affect that would not be realistic (running up staircases on oxygen, a pool in a hospital, Stella's immediate wake-up after transplant & not even cringing while crying about Will...etc), but going into it, I knew that was a possibility and it didn't change the way I felt about the movie.

I am SUPER excited for more people to see this movie, especially those who may not know much, if anything, about Cystic Fibrosis. I think this movie is going to have a huge, positive impact on the way people understand CF and how important it is for us to continue fighting until we have a cure!

So overall, YES I felt this movie portrayed CF in an excellent way. YES, I think it's awesome for the CF community to finally get some recognition. YES, I'd definitely see it again...and possibly take notes on my favorite quotes. :) If you go see it and have more questions about CF, I'm an open book, so ask away.



Below I've added a couple links to interviews with the actress who plays Stella and the director of the film, posted by the Cystic Fibrosis Foundation. I found them very interesting & they gave some more background on the movie. **Oh, and I really want to read the book, too**
Part 1, Part 2, Part 3

Tuesday, February 12, 2019

Calvin, One Year!


To my rainbow baby,

Today you are one year old! Today we celebrate you being a part of our family for the last year. You have brought so much happiness into our family - I couldn't imagine life without you!

You have learned so much this month! You're walking!!! You started taking your first steps a few weeks ago and were cruising around furniture really well, but wouldn't let go and walk on your own. Then on your birthday, you decided it was time to walk everywhere! We went to Anna's school family dance that night and you walked all over that gym, it was so cute!

You've started imitating a lot, especially animal sounds. You know dog, pig, cow and duck on your own, but also imitate monkey, bear/tiger/lion, and owl. You love looking at your animal books - it's really the only time you'll sit still.

You're also absorbing so much by listening to us talk. You're learning how to give things when someone says, "Can I have that?" and you are learning how to put things back (not just take them out).

You've also learned how to stand in your high chair and need to be watched like a hawk while you're in there. You are going to be a handful over this next year... I can feel it. Anna loved to climb (and still does), but I have a feeling you're going to try to get into everything and climb.

You are still a good eater, although your huge appetite comes and goes now. You still nurse a 4-5 times a day on the weekend and a few times a day during the week - usually after naps and before you go to bed for the night. I want to continue nursing at least through flu season in hopes of keeping you as healthy as possible. That means I'll probably continue pumping for at least a few more weeks - never thought I'd say that, but it's worth it. You no longer take bottles, but take pumped milk and whole milk from a cup. You still have only 4 teeth, although I could have sworn you were getting more this month the way you've been a little extra fussy... not yet though. Your nighttime sleep is still great and you typically take 2 naps a day, but sometimes an extra catnap is needed in the evening. At your one year appointment, you weighed 18lbs 11oz and are 29.92 inches tall.

Things you love: books, animals, Anna, Archie, singing Wheels on the Bus & trying to do the motions, when someone chases you and says, "I'm gonna get ya!", The Office theme song (you dance every time), your paci, being outside, climbing

Things you dislike: getting your diaper changed, when I don't pick you up, falling down when you're walking, when things get taken away from you (we're better at tricking you now that you know what it means when we ask if we can have something).

This has been an exhausting year for me, but also so, so fulfilling! I never knew how much love I could have for my kids, and it's just the best thing ever. I'm looking forward to this summer with you and Anna!
Love you, Bubba!

Saturday, January 26, 2019

January Clinic Appointment

On Thursday, I went to my regularly scheduled Cystic Fibrosis clinic appointment. I knew that it was time for my annual blood work (plus genetic testing) and a chest x-ray, so I decided not to bring the kids with me. Anna had school and there's no way very-active Calvin would have been happy with all of the sitting/driving.

I decided to head up to Chicago earlier than my scheduled appointment to hopefully avoid the long wait in the lab and knock out any other tests before seeing the doctor. I arrived at the hospital around 9am and was able to get right into the lab to get my annual blood draw (7 tubes) and an extra tube for genetic testing. I believe that last time I had my genetics tested was about 10 years ago, and they were only able to identify one of my mutations - G551D. The other is still unknown. With all of the new medications in the pipeline, it's important to know exactly what my mutations are. As of now, I'm on the best medication for my mutation. Kalydeco is specifically for G551D, so the likelihood of me switching to a different medication any time soon is low, but learning my other mutation is still good information to have.
Jan 2019 - more areas of white
(plugging & mucus), especially
in the upper right lobe. Also a bit
more in my left lung.

April 2017
After my blood draw, I went downstairs for my chest x-ray. I actually requested getting the x-ray because I've been having such a rough time with coughing up blood lately - my latest episode was that morning when I woke up. I was so frustrated after seeing that, I emailed the nurse and asked her to put in the order. I wanted to see how/if my lungs have been affected by the sporadic hemoptysis episodes over the last five months or so.

After the chest x-ray, I waited to get a clinic room forever. As much as I love my doctor, I can't stand how long it takes. I feel like they're always running behind. Anyway, I did my PFTs, met with a new physical therapist (did a 6 minute walk test), saw the pharmacist, social worker and dietician before the doctor finally came in two hours after my scheduled appointment.

Thankfully my PFTs were pretty much unchanged from September's appointment. I was really glad and pleasantly surprised. But, that didn't explain what's going on with my lungs.

My doctor and I had an excellent, over an hour long, conversation. *That's what happens when I don't bring the kids* I showed her the calendar charting all of the dates that I've coughed up blood or had some streaks in my mucus. It seemed to be at least every two weeks, but without any kind of pattern or cause. It's happened when bending over, walking up stairs, just standing there, laying down, sitting up.... no pattern. Twice since August I've been on antibiotics - one round of Cipro in August and one round of Augmentin in November for a sinus infection. Even when on the oral antibiotics, I was having blood/streaking.

Then we finally got to the bottom of it - sort of. It's been months since I've been on inhaled antibiotics. I stopped taking Cayston in the summer or fall because I noticed I was coughing up blood more frequently while on it. I had tried a month of inhaled Tobi, but it made my lungs feel super tight, so I only managed about two weeks on it. So, since the fall, the pseudomonas (bugs in my mucus) in my lungs has been free to do whatever since it wasn't being knocked back by inhaled antibiotics. My doctor thinks this has caused a lot of inflammation in my lungs and irritation of my airways leading to all of the hemoptysis episodes. Thankfully, it hasn't made my lung function drop.

It made sense, and I'm really hoping she's right. So with the mucus sample I provided at the appointment, the doctor requested that the lab test the resistance of my mucus against the inhaled antibiotic called Colistin. As soon as we hear back, and are sure that my bugs are susceptible to Colistin, I'll hopefully be starting it. My doctor also wants me to go back on Azithromycin on Monday/Wednesday/Friday to help decrease the inflammation in my lungs. I originally stopped taking it about 5 years ago when we were trying to get pregnant for the first time. Its kind of a bummer to be put back on a medication that I've been off of for so long, but it's definitely needed right now. I feel like my list of non-IV medications is slowly dwindling, so I am really banking on the Colistin to help give my lungs the boost they desperately need.

I think we have a good plan in place and I'm trying to be optimistic. I know that 80% FEV1 isn't too far from my baseline of 85-88%, but I don't like seeing my numbers there. I hope that the medications will help my lungs get back in shape. I also need to really make an effort to add exercise into my routine to get my lungs working more. This is always the hardest part for me due to time constraints.

Right now my next appointment is scheduled for April, but I wouldn't be surprised if she wants to see me back sooner to see if the meds are working.

Next hurdle.... getting the meds approved my insurance and shipped out in a timely manner...

Wednesday, January 9, 2019

Calvin, 11 Months

He was not too happy about laying down for his picture this time.
Bubba,
Oh my goodness, how can you be eleven months old today?! This last month we celebrated your first Christmas(es). You were very lucky and received lots of diapers, new outfits, some jammies, and a few new toys and books. You enjoyed ripping the paper and playing with your cousins.

This month (well, actually the day you turned ten months old) you learned how to stand up in your crib. Now pretty much every time I go to get you up, you're standing. Your legs are getting so much stronger. You pull up on everything and cruise around furniture a lot faster than before. Just within the last week or so you've been getting brave and try to stand on your own. You can only make it a few seconds, but it's a start and you are so proud of yourself.

You've learned so much this month, too! You can now say "uh-oh" (learned just a couple days before Christmas), you play peek-a-boo when we say "Where's Calvin?", you give high-fives, and you are starting to understand so much more. You look around when we ask you where Sissy is, or Archie, or your new stuffed animal dog Frankie. You also know what it means when we say, "Go get a book". We're working on a little bit of signing and you inconsistently can sign "more" and "eat" (the most important ones!). It's been so fun this month because you've become so much more interactive.

Your feeding has changed dramatically this month as well. You've learned how to drink from a sippy cup (do the best with the 360). We started with water and you weren't really interested & couldn't figure it out. Then I tried whole milk and shortly after you caught on. While I was on winter break, I was giving you whole milk whenever you'd eat in your high chair and you did great with it. Now that I'm back to work, you drink my milk with your meals, and once that's gone you take whole milk. Thankfully, you don't seem to care about the switch which is good.
Also, we're done nursing overnight. After the holidays calmed down, I made the decision to stop nursing you overnight. With you getting so much food and milk during the day, there really is no need to nurse overnight anymore and you've been doing SO well! You'll sleep all night long, occasionally fussing, but you're able to get yourself back to sleep within about 5 minutes - it's been wonderful!

With all of this food and milk during the day, you're definitely gaining weight. You had your follow-up appointment from your November ear infection the day after Christmas and you weighed 17lbs 7oz then. You're finally in 12 month clothes (some are getting too small already) and I moved you up to size 4 diapers because your belly is growing! Your little chubby fingers are filling out again just like when you were a newborn, along with your belly and your arm & leg rolls... I'm so glad! You also now have 4 teeth - two on top & two on bottom.

You and Anna are just SO cute together. You really love her and she just adores you. She is so good with you (even likes to carry you around which makes me nervous) and I just hope that your relationship continues to grow. It's so fun watching you guys play together.

Oh, and how could I forget - Daddy gave you your first haircut the other day... it was more like a trim, but we had to get your hair out of your eyes. You would rub food in your hair pretty much every time you ate and it was gross. So we put you in your high chair to eat breakfast and Daddy tried his best to trim your hair. Its much shorter in the front (I'm still getting used to it), but I'm glad it's out of your eyes.


Likes: Food, milk, looking at animal books, playing with Anna, people watching, your pacis, Frankie (or any stuffed animal really - you hug them, it's adorable)

Dislikes: When I walk by and don't pick you up, falling down after standing, when there's no more food on your tray and you're still hungry

It's been a really fun month, Bubba. I can't believe we're going to celebrate your first birthday soon! I wish I could have two weeks off every month to spend with you, but hopefully summer break will be here before we know it. 
Love you, Bubba!

Monday, December 17, 2018

Calvin, 10 Months


You did not want to be laying down for these pictures, but couldn't remember how to roll over,
so you just laid there screaming! 
Bubba,
How can you be ten months old already?! 
  • You have a huge appetite - we've started feeding you food more regularly throughout the day and you are all about it! I swear sometimes you eat more than Anna does.
  • You've learned to clap when we say "yay"
  • You wave for "bye-bye", ni-night", and "hi"
  • You started pulling up on furniture, my legs when I'm standing...pretty much everything
  • 2 pacis at bedtime for the last couple months - one to hold, one for your mouth
  • You scream randomly, in a very angry way and we haven't figured out why
  • Still very attached to mommy
  • Learning how to bounce up and down when we say "dance"
  • Your top tooth finally has cut through your gums, I'm sure we'll be able to see it over the next few weeks. That tooth took forever! The one right next to it isn't too far behind, either.
  • You had your first ear infection, cough, and round of antibiotics. Thankfully you loved taking them for the most part and would say "mmm" every time. 
  • You weighed 17lbs 3oz when I took you to the doctor when you were sick. That's up 6 ounces about two weeks after your nine month appointment. :-)
  • You hum to yourself the entire time you're eating in your highchair
  • Some days you seem so old! It's exciting to watch you grow and interact more :)

Friday, December 7, 2018

Colleen, The Writer

Hi all! It's Colleen, the writer and creator of this blog. When I created this blog back in 2011 I intended for it to be about my life with Cystic Fibrosis. As the years progressed, I've added in personal touches about my growing family, and now I feel like my kids have taken over my blog! But in a way, that's life! My kids and my family are my life, and CF is just a part of it.

I suppose I should update a little bit about myself lately. I'm an exhausted mom and teacher, but loving life. This summer I changed jobs, now working in a rural, small-town school district which is a complete change from the large urban district I was in for the last six years. I'm also teaching fifth grade now which is a lot different from third grade, but it's been fun. I have great partners and coworkers and only twenty students in my class this year.

Along with a new job, came new health insurance -- for someone with a chronic illness, it's quite a pain. Moving to a much smaller district, too, meant that my benefits were more expensive and covered a little less, but it's worth it because my job is less stressful. I've had to switch all of my prescriptions over to a different pharmacy, but thankfully I'm back now with Foundation Care and they are wonderful. **No more Express Scripts or Accredo!**

And if having a preschooler, a nursing infant, and a new job aren't enough on my plate, I'm also finishing up my Master's degree in Teaching and Learning with an emphasis in science. I am one project away from finishing this semester, and one research class away from graduating in May!! My plan is to continue on to receive my +32, which means 32 credit hours beyond a Master's degree (and a big bump in pay).

CF-wise, I've been doing alright. My overall lung function is now in the high 70s and I think a lot of that has to do with how exhausted I've been over the last year. Adding another child into the mix, especially one who's a total boob-man all night long, has been way more exhausting than I would have thought. But man, he sure is cute! I am hoping that once he hits a year old he'll start sleeping better, which means that I can start sleeping more, but we'll see. Honestly, I haven't been the most complaint with my treatments this fall, so that hasn't been the best either. I'm trying to get myself back on track though. I've also had several episodes of hemoptysis over the last six months and I'm not sure why. My plan is to do a three week course of Cipro as soon as I'm done breastfeeding, hopefully to kick out all of this extra crap in my lungs. Overall, I'm not feeling 100%, but I'm not feeling terrible either, just kind of "meh" for now. The winter is always tricky with school and germs, but I'm going to try my best to stay healthy as always.

Hopefully you've been enjoying all of my posts about my sweet kiddos. I'll try to do better about adding more about CF on here, but I just don't like to give my CF any extra attention - it's not what defines me.

Thursday, November 15, 2018

Calvin, 9 Months


Oh Calvin, you have such a personality! Daddy says you're just like me... maybe it's the way you're loud, you're a people-person, you love food, you talk (babble) with your hands, or maybe your little temper... either way, you've been super clingy this month, especially the last week. We're around each other so much, it's not surprising that you'll start to act like me! :) You haven't wanted me to put you down this week, it's kind of exhausting. Even if I'm sitting on the floor with you, you want to be on my lap instead of next to me. If you do venture away to play with something, you'll quickly realize you're not near me anymore, turn around, stare at me and cry. I have no idea where this is coming from all of a sudden, but I'm hoping it'll pass soon. 

Before this clingy phase started, you've been such a happy little guy. You laugh at everything, babble a lot and follow Anna everywhere. She's been so good sharing her stuff with you and making sure you're not putting her stuff in your mouth (and if you do, she's okay with it, too). Speaking of, you eat everything off the floor. You find the littlest of crumbs and of course they go straight into your mouth. Luckily for us, it's pretty obvious when something's in there because you keep it in your mouth for a long time. You get extremely angry when we try to take it out of your mouth, too. You also get angry when you're in the high chair and your tray is empty, and when I walk by you when you're on the floor and I don't pick you up... little bit of a temper there...

You still crawl with one foot to push yourself and the other leg just kind of slides along. Every once in a great while you'll try to crawl the traditional way, but your way is faster. You want to pull yourself up/stand, but you're just not balanced enough. You still don't understand that if you're holding something to stand, you'll fall when you let go.

We celebrated your first Halloween this month and you were dressed as Olaf and Anna was Elsa. It was cute! I just bought you a white hat, glued some felt on to make the face, stuck pipe cleaners through as your twig hair, and glued some black felt circles on a white onsie for your body. We dressed you guys up for Boo at the Zoo and people were able to tell who you were, so I'd call it a success. On Halloween, it was too cold to see your shirt, but the hat kept you warm. :)

Other random things about you this month:
*You still have two teeth on the bottom, but I'm guessing you'll be getting more soon.
*You go to bed at 7:00pm each night, and thankfully the time change didn't effect you too much
*You're finally eating better - rather would feed yourself and we haven't found much that you don't like
*You're back to waking up frequently at night. At your nine month appointment, the doctor said I need to stop feeding you overnight, but I'm just not ready (never thought I'd say that!). I think you need the extra calories right now and I don't want to sleep train you until I have some days off. Maybe over Thanksgiving weekend we'll try again...or Christmas break?
*You only gained one pound and grew one inch since your sixth month appointment. Your growth has definitely slowed down, but it's been a struggle to get you to eat larger quantities the last few months, so I can't say I was surprised. Your babysitter and I are really going to work on getting you to eat more (bottles & food) during the day. You weighed 16lbs 13oz and were 28.25 inches tall.
*You take your bath in the regular tub now and you love it! You crawl around, splash and smile the whole time.
*When you're held by someone new, you like to touch their face - it's like it's your way of saying "hi"

You're full of personality, have the best smile and are just the perfect addition to our family! Love you, Bubba! 

Monday, October 8, 2018

Calvin, 8 months


Bubba,
You've made a ton of gross motor development this month! You're much more stable at sitting up. You can also go from laying on your belly to the sitting position which you learned very quickly after I helped you once or twice. You're crawling.... well, your own version of it :) You use your arms correctly, and one leg, your left leg to be specific. Your right leg is in a bear-crawl position and you use it to push/step yourself forward. It's so cute! I'm guessing it'll only last a little while before you figure out how to crawl the right way...maybe. I won't be surprised if by next month you're starting to pull up on things. You still want to walk so bad!

Your night sleep is finally getting better - woo hoo! I only nurse you around midnight and then again around 5 when I wake up. If you wake up any other time, you're able to get yourself back to sleep pretty quickly. You've become a belly sleeper and I think it's adorable! You sleep on your belly for every nap and overnight. You also move a ton either as you're trying to fall asleep, or when you wake up, because you've been found in some interesting positions. You've gotten yourself wedged into the corner of your crib a couple times (and gotten really mad), but you can usually get yourself out. I keep your bed stocked with at least two pacis so that hopefully you have a better chance of finding it overnight if you need it.

You cut your first tooth, on the bottom, over camping weekend and it's slowly growing in - it's adorable! The tooth next to it just popped through, too. I can also see the very tip of one of your front top teeth, but it's not through yet. Along with those adorable little teeth, we've introduced you to more table foods, little baby yogurt bites, puffs, and you sat in your first restaurant high chair over the weekend at Coney McKane's and did so well. You're also finally starting to nurse for longer stretches again. You still do the best when we're in your room, and I often shut the door (to keep Anna from popping in), but you've done alright in the living room a few times.

You love: Anna, Mommy (you're a little attached), when Daddy is silly with you, swimming, chewing on everything, eating what we eat & feeding yourself...

You dislike: When things get taken away from you, being put down on the floor when you're tired, when I walk past you and don't pick you up, dropping your paci out of your bed, getting your nails trimmed...

You're a chatterbox, have adorable brown eyes, the longest eyelashes, and are just such a happy guy. I love how much more interactive you are now -- the fun is just beginning! We love you so much!