One Year in our New Home!

Just thought I'd share really quickly-- we've closed on our house a year ago today! Since then, we've made several positive changes (remodeled a bathroom, painted rooms, rebuilt a cabinet, etc.) and I'm very happy with where we are in our lives.

New challenges as we continue to move forward? Paying for medicines... but that will be another post for another day.  Thankful for resources and a mom who is doing a lot of leg-work for me.

Have a wonderful weekend!

-A

A Christmas gift to myself

Merry Christmas again everyone!! :]

I hope your Christmas was just as fantastic as mine was, filled with the story of Christ, quality time with family and of course, great food.

On a less happy note...
Warning, brutal honesty up ahead. To keep your Christmas cheer intact, read later!
So, I'm frustrated with myself. I fluctuate on being compliant and not. Current status: bad Annie. But my Christmas present to myself is compliance.

It's a gift to myself because if I'm compliant now, I'll still have time for things later in life when I'll really want to still be around. And also for the now. Right now, I sound terrible, coughing too often for my personal comfort. I can barely play soccer. I can hardly sing. I can't lie down without people asking if I'm ok because I'm coughing so much. NOT OK WITH ME. Yet, I did this to myself. So, with roughly 20 days until my next doctor's appointment, I'm challenging myself to be 100% compliant. Not only in meds but also in fitness. I may not run 2 miles every day (although I am still really proud of myself from that day in Dallas), I need to run some and walk some. Mom also got Zumba for the Wii for Christmas and I tried it out with her today. It's really hard, but has great potential to be a serious workout. In an extension of my compliance, I've also upped my Vest time. Instead of 15 minutes once a day (which is surprisingly low), I'm doing 30 minutes at night and 15 minutes in the morning. This is not a suggestion, but an executive decision on my part to change my routine. It's set in stone as far as my compliance goes.

This morning was rough with the pills. Breakfast took a little longer than I anticipated to be ready, so I felt very sick for a few minutes with a handful of pills on an empty stomach. With a few crackers, it was remedied.

I can't decide whether this is going to be difficult or not. So far, it's not really been that hard, but it's been a mind of matter situation. It's so much easier to pop a select few pills and walk away than it is to wait and take them all, but I am getting my mind over the urge to just walk away. So far, so good. I've been 100% compliant so far and I fully intend to keep it that way. I've thought about getting someone to keep me accountable, but knowing myself pretty well (ha!), I know that the person gently reminding me or asking if I've taken everything, every day, would drive me up a wall and I would probably give up and be angry/frustrated about it. So it's just me holding myself accountable to myself and to this blog and to my own personal records.

I can do this.

My goal is to extend the compliant nature past my doctor's appointment of course, and hoping that by that time, things will simply be habit once again and I won't have to do a daily battle with myself!

Finishing up my 30 minutes of evening Vest, about do to my evening Cayston, then making myself a water, taking my evening pills, and then I'm off to bed. I've had a very, Merry Christmas and I hope you have too!

-Annie

Video of hope

This is a great video about Vertex, the new drugs in the CF pipeline. This guy explains how the drugs work on a level that everyone can understand it. Please take a few minutes to watch it and hear the great news about the future for CF drugs!

-Andrea

Back in the swing of things

Classes started back up today, hello Winter Quarter. You're going to be just as difficult as fall quarter, if not more so. I enjoyed my first day of classes though. My physics professor is Russian, but after about 5 minutes, I adjusted to his accent and understood most of what he said. Walking back into my anatomy class was same ol' same ol'. Same people, same seat, same professor, same classroom, etc. The difference is the attitude my group of friends is taking about this class. We all made the same grade and plan to all make a better grade this quarter!!

I did some decorating in my room today! I hung up 2 collages of pictures, some curtains across my closet opening, and got a little more organized. Having guests in the morning... ;]

I have a cold! No!! It takes me awhile to fall asleep at night due to the coughing, but at least it's very sound sleep. I took a nap today that was supposed to be 30 minutes and turned into 4 hours. Whoops. I needed the sleep though. I just picked up some Dimetapp Nightime cold & congestion hoping that it helps me get to sleep easier and some Advil for my throat. I have also had NO Dr. Pepper in 2 days now. I've been drinking only water and sweat tea (mostly water) hoping it helps my throat/vocal chords. Trying not to talk too much either.

Dear Cayston users, consider joining the ShAIR network! It's easy, it's free, and it helps the CF community! Shoot an email to this address ( info@shairnetwork.com) or call (1-877-742-4770) and they will send you a simple form. Fill it out, fax/mail it back, and they will set up a phone interview. I really enjoyed my phone interview. If you want anymore information on the ShAIR network, email me or email the address I just gave you or call their number! Do it!

Off to wash dishes.. or eat more. Or both. We'll see. :]

Happy December!

-Andrea

The Call for JM

A fellow CFer, who I will refer to as JM, got The Call for his lungs about 7 hours ago. He lives in a city only 30 minutes away from me and the largest group at my local Great Strides walk a month ago was for him. I have no updates other than he got the call. I'll update as I know things.

Thanksgiving post is coming up along with a great video my mom showed me about some upcoming new drugs! We have so much to be thankful for!

Be back soon!

-Annie

Doctor's Appointment recap!

PFTs: same as my appointment last month

Weight: same as my appointment last month

Amount of blood I'm coughing up each time it happens: less than the time before

My doctor did not see that any action needed to be taken! That whatever the problem was, it was being fixed already. I will stay on the upped dose of Vit. K until the end of the year.

This is fantastic news!!!! Everybody was very confident in me (including myself) that I would get a great report and ta-da! I did!

Thank you for your concerns/prayers/thoughts everyone. I needed to go in to see my doctor and I'm glad I did.

:]

-Andrea

I haven't forgotten...

So my lull in blogging is due to getting the stomach bug right after the Great Strides walk, going to the local Urgent Care clinic to get a phenergan shot, and a topical prescription, and then trying to make up important school things (like my English midterm!) on top of Homecoming week this week and preparing for big sis/lil sis week next week!!

The race was a huge success, as I mentioned before in my last post. I really appreciated everyone who came out to support me (including Alissa who drove several hours to get there!) and the amount of money that was raised was incredible. I'm still floored. $29,000. Wow. Just... wow.

Nothing else to really report on right now I guess. I've been given another incredible opportunity to tell more people about CF, but I won't actually tell about it until after the fact. Hee hee. :]

My birthday is coming up! I'll be 20!

Umm... other than that, I can't really think of anything to report. I'm back on Cayston, I'm on bactrum because I had a cold (prevent a second infection), and otherwise feeling much, MUCH, better than I had been over the last week or two.

Ok, I'm starving. Time to EAT!

-Annie

Good Time Management

Quick post/story about today

My schedule today was church, mock recruitment, and go home. The times were as follows:

Church- 9am to 10am

Be back at the Sigma house at 11:30

Mock Recruitment from 1:30-3:30ish

Workshop from 3:30-6

Skit rehearsal 6-we're done.

AHHH!!!

Somehow I had to fit in Cayston, which needs to be 4 hours apart, in there! How did I do it?? Good time management..........

..............in other words..........

I woke up at 5am to do Albuterol (fell back asleep whoops!) and did Cayston at 6am. I went back to sleep (on purpose this time!) until 7:something so I could then get ready for church. Then, between church and being at the Sigma Kappa house, I fit in my afternoon Cayston!! That was at almost 11am. That's 5 hours!!! WOO!! But if I hadn't planned out my day ahead of time, knowing how it was going to go, and then getting up early enough to get it done, my day would have gone very differently.

Mind you, if I had told our advisors/rush chairman that I needed to run back to the apartment to do some medicines, they would have let me go without any problem. But I didn't want to do that! I want to be THERE spending time with my sisters and singing the songs for the 1,395,599th time this week! I don't want to have to excuse myself from my LIFE because of CF unless I really need to. And today, it was fixable and I went very out of my way to fix it so I could be there when I needed/wanted to be.

Now, it's time for the evening dose of Cayston before I finish this round tomorrow afternoon!! Get excited, I know I AM! Just in time for Rush!!

-Annie

ps: I'm so glad my aunt and my sis-in-law got to come today! It made it even more special to me that you two came! THANK YOU!!

Cayston: Complete picture walk-through

*Warning- a TON of pictures up ahead!*

*And click on the pictures for a CLOSE UP! And keep an eye out for my CF awareness band!*

*Lastly, thanks to DAD who took my cleaning pictures while I was demonstrating! A huge help, thank you!!*

Thanks to Feedjit, I notice that many of the searches that lead people to my blog consists of the word "Cayston". Since it's a new drug, I thought I would post a non-sponsored, completely my own advice walk-through of how I clean and use Cayston.

It starts off with the cleaning and then moves to the usage. Sorry, it's late, so I posted them backwards. You'll live. Just scroll down if you want to read the usage part first. It's labelled with a big, fat title.

Disclaimer: This is information I have either gotten from the CFF website, from the information sent to me with Cayston, or my own variations. It is not official medical advice, just something I thought might help people who were as lost as I was when I first started Cayston.

Mom's Disclaimer: Sorry if you see any sort of messiness or clutter. Pretend you didn't see it and move on. Thanks!

CLEANING!!!!

First, you need to get some dishwashing detergent that is *NOT* antibacterial!
For cleaning, this is the setting and the actors: dirty Cayston pieces, the detergent, and the Ziplock containers they sent with the Cayston stuff for the first time.
With warm/hot water, we rinse out all of the non-metal Cayston pieces...
....and place them in the Ziplock container, which is filled with detergent and warm water.
I usually separate the grey piece to make sure I get it all washed out. (WARNING- if you have a sink with two halves, use the side without the open drain! If not, cover it up... you don't want those pieces falling in!)
Rinse....
...and drop in the same container as the body.
Rinse both the blue rubber piece...
.... and the mouthpiece thoroughly, getting all of the openings too.
And in they go with the other plastic pieces.
Close the lid.... (but don't turn it all the way, because it's really hard to get back off)
...and shake it up!! Warning, water will go everywhere.
Rinse the head in a slower stream of warm water... both sides. (Note: this is also done immediately after finishing a Cayston dose)

Open the container with the plastic/rubber pieces and rinse them off individually with the warm/hot water. Set out to dry (see later picture)

This is how I set them out to dry. They don't stay here but more than a minute while I set up the sterilizer (aka Nuk baby bottle cleaner that they sent with the first Cayston dose)
Since I also washed the containers while washing the pieces, I set them out to dry. (For each paper towel piece you see, there is a second one under it, giving it a double-layer)
In the front of the baby bottle cleaner, there is a measuring cup. It took me WAAY too long to find it on my own, sadly.

Fill up to about the top.

And pour it in the metal pan
Here is the gut of the baby bottle cleaner.
This is where the main piece will hang, using the hinge of the piece. It will only fit 3.
Here's the top rack of the baby bottle cleaner. This is where everything else goes. I have mastered fitting in 3 Cayston sets in here without anything overlapping. Observe:
First goes in the head, which cannot lie flat. However, they fit perfectly around the legs of the middle knob.
Like such.
Next comes the assembled top piece, which fits between each head, making three points on a triangle.
The rubbed blue pieces, which I lay "face" down, will cozy up to the grey tops nicely.
And that leaves plenty of room for the mouth pieces. Perfection!
So now we put the gut of the baby bottle cleaner back on the metal pan
The rack on top of that
And then the lid!
Now, we have the one solitary button on this machine. What to do?

We push it down of course! Oh look, a light comes on! It will run a few minutes (the book says 8 I think, but it never seems that long to me) and you might hear a quiet "pop" noise. That's it for an alarm. However, you don't want to open it immediately after it's done, since it will be super hot and steamy (like me... juuuust kidding). So give it a few more minutes and take the lid off. It will be covered in condensation. I turn it upside-down, hit the knob on the counter to gather the water, and dump it in the sink. Problem solved.

This is how I lay them all out. Notice I open the grey pieces because the white part retains water. The blue rubber part doesn't air out well, so I prop it up on the mouth pieces and it does much better. Can you tell I'm an engineer's daughter?
I also prop the lid up so that it can finish drying too.

USAGE!!!!!!!!!

A little while later, after everything dried, it's time to do a dose!!! This is the glass bottle and plastic ampule that will be used. They are kinda cute.
First, we need to assemble the pieces. Take the large plastic one and open it.
The head goes in that funny looking side as such. It kinda snaps in.
The blue piece goes in opposite the head.
Close it!
Attach the mouth piece
This is where it connects to the power source/machine. It has a hinge and GENTLY snap it on. Mine is already broken in two places, but still works just fine.
This is the almost ready Cayston piece
The machine
The battery compartment is in the grey area. But if you don't want to use batteries...
This is where the hole is for the other end of the wall adapter. It comes with the Cayston stuff as well.
This end is for the hook up of the grey piece we already attached to the mouth piece a few pictures back.
We need that cute glass bottle again! Take the aluminum tab, pull down, and start pulling around to get it completely off. It breaks occasionally and can be a pain, but it needs to come completely off.
It will look like this!
Empty the ampule into the glass bottle, put the grey stopper back on, and SHAKE! It needs to be clear to inhale properly.
Pour it into the top of the mouth piece. It will only be about this much.
Put the grey piece on and turn to make sure it is closed.
Press the solitary button and hold for a few seconds. It will beep...
....and this screen will appear after the PARI screen. This means Cayston is going!
No talking! It's very short so if you need to take it out of your mouth, press the lonely button and hold to stop the treatment. It won't be happy with you, but it works. Like that I'm in the kitchen still?
It will beep 2 times and show you this screen when it's done. (Sorry it's hard to see) It lasts around 1 1/2 - 2 minutes. My piece will sometimes "click" a few times right before it's done, but I'm not sure if that's everyone, but if you hear that noise, don't panic!

GENTLY pull downward on the grey back connection to release it.

Open up the body and free the head. (It has tabs on the side you need to push in to get the head out)

Rinse both sides IMMEDIATELY after usage, and set out to dry.

And as an added bonus of fun, those nifty Ziplock containers they sent, they hold the Cayston pieces perfectly (probably the reason they sent them!)

Hope this was helpful!!

Link to the CFF Cayston video

-Annie