Doctor's Appointment update!

Today was my first doctor's appointment of 2011. I am always paranoid that my appointment won't be good, especially when I don't even feel well. I kept my mouth shut this time even though I had accepted a bad report. Here are the stats:

Weight- 114.75 lbs... down from ~116.
FEV1- 72%! Up from 63%
Total capacity- 73%!! Up from 64%

WHAAATT?!! Both lung numbers are up 9%!! Dear friends, I have been preaching the miracle of Cayston without results, but now I have solid results: Cayston WORKS. Are you listening?!! It took me a few doses to get results, but I have results!!! 9%!! I've never had a jump like that before. I was blown away. Absolutely blown away.

Three words: God bless Cayston.

I also saw today JM who recently got his new lungs. He looks good and his mom said that he is doing so much better. That's such great news.

:]

-Andrea

3 Finals down + pictures from the weekend

I just breathed a HUGE sigh of relief after those first 3 finals jam-packed into today. Even though I still have 2 really hard tests left (one Tuesday, one Wednesday), I feel so much better now that those first 3 are behind me!! I felt it was time for a post!

Teaser: some exciting news with Gilead Sciences (makers of Cayston) and some of their partners and me are underway, but no details until later! Just get excited, because I am!!

As of late, I've been devoting almost every free moment to studying for all of these tests. It's been really difficult, but somehow I've managed. My treatment schedule was really off though. For example, I normally do the Vest at night, but I'm doing last night's Vest right now, and will another evening one before I leave to go study. It's crazy, but it's only for a few days. Then HOME HOME HOME AGAIN!! I can't wait, seriously. I just want to pack up and drive home now. If only I didn't have those 2 more tests....

I went home this past weekend for about 24 hours to spend time with my brother/sis-in-law/niece/huskies from Austin, TX, and my in-town family who all gathered for my nephew's 1st birthday party!! Has it really been a year already?! Wow.

Here are a few pictures from the weekend:

Look who showed up! It's me and the boyfriend.
My two brothers with their kids!
Precious, precious niece. I think they look so much alike in this picture.

Such a sweet moment; a mother and her child.
She was so tired!! This picture is just too cute, I had to post it.

And last, but not least, the birthday boy and his mama!!!

Hunger has taken over anything else I can think to type about. Time for food!

-Andrea

MIA-- sorry!

Long story short:

Next Monday, I have 4 tests. 3 finals and a make up exam.

Next Tuesday, I have 1 final, a lab final, which is harder than the final in the class.

I have been MIA due to studying and this will continue until quarter break (after I finish my last final).

Otherwise, here is a quick announcement for those of you using Cayston, requested by some folks who work with Gilead:

DO NOT THROW AWAY YOUR ALTERA PIECES!!!! Save and reuse.

Also, SAVE YOUR EXTRA SALINE FROM THE CAYSTON DOSE! You never know when you might need them later.

I will make this announcement later too, just to make sure it gets across.

Signing out for another week; thank you college.

-Andrea

Hemoptysis update #2

Alright guys, unknown cystic called me out. I've been MIA about my health updates.

I called my clinic and talked to my doctor. She was glad to hear I put myself back on Vit. K because she would have put me back on it too. She upped my dosage to once a day while I'm on the bactrum (and I still have several days left). I got the ultimatum that if, in 24 hours, I was still coughing up blood, I was to drive home and go see my nurse practitioner (because the rest of my clinic was at the conference!) and get checked out. I was to not exercise or do the Vest, or do anything to stimulate coughing, aside from just my normal day-to-day cough. Otherwise, nothing else was changed.

I prayed hard and waiting for the 24 hours to pass: no blood! I think my lungs got the message that bleeding is not ok and stopped. :] I just started back on the Vest last night, since the hemoptysis had stopped, but I'm being cautious with it. I don't want to start it back up again.

My doctor said it was either just the antibiotics or I actually had a bug of some sort. If I had any bug, I'm guessing the bactrum and Cayston took care of it. But really, I think it was just my lack of Vit. K in my body.

Hooray! Coughing up blood is NOT fun. Glad that's over.

Sorry for the late update, Unknown Cystic. I've been insanely busy with Sigma stuff and finishing catching up on homework from when I missed.

-Annie

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

Doctor's Appointment recap

First, I would like to say that I waste a lot of time worrying! And while it is a good thing to listen to your body and see what's wrong with it, sometimes our bodies aren't saying what we think they're saying. That being said...

I had a pretty good report! I gained weight, PFTs were stable, and my freaky lung pain is gone. We guessed that the lung pain was from my very sudden shift from a sedentary lifestyle to a very active one. My throat is hurting because I have a cold. That's all. A simple cold. No need for antibiotics, just to wait it out. AND, I was so worried about clinic taking the usual several hours and me missing my 1pm lab back at college, when this clinic visit only took and hour and a half! Shortest clinic ever! So not only did I make it back in time for my lab, I had time to eat lunch with the boyfriend too. Awesome!

So, here are the numbers:

Weight: 116lbs (up from 115)

FEV1: stable around 68%

I worry too much. lol

Starting Cayston today again.

Alright, time to carry on with my life. :]

-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