Clinical Trial?

Yesterday while I was at my clinic appointment, my doctor mentioned something to me about possibly being eligible for a clinical trial. The study is to compare the antibiotic Tobi (which I'm already on) to a new inhaled antibiotic called Levaquin. Currently Levaquin is only available in IV form, but they're hoping to get it approved in the inhaled for because inhaled meds work much faster (according to the study lady, named Spring!).
I haven't signed up for anything yet, I'm just getting the information today and I'm processing it. Obviously it's something that I need to talk to Tim about because Spring said that we are not allowed to get pregnant while I am participating in the study. I think I can put that off for a good cause.
The study will be about six months long. I will be on either the Tobi or the Levaquin (the doctors will know what I am on, but I don't think I will) for 28 days, then I will be off for 28 days and that counts as one cycle. I will have to complete three cycles in the study. The part that I'm hesitant about is all of the clinic appointments. I will have to do an initial appointment to make sure I am eligible for the study while I'm off Tobi. Then if I'm eligible, about two weeks later they will start me on the drug. The first time I take the drug I will do it at the clinic to make sure that I don't have any negative side effects before they send me home to take it - so we're already up to two clinic visits, in other words, two days off work. Then every time I go off and go back on, I have to go to the clinic and get PFTs, blood work, fill out questionnaires and be evaluated by the doctor. In the end, it adds up to eight clinic visits over the 6 month period. I'm just afraid of taking eight days off work. All of the clinic visits will be paid for by the study people and I will get compensation for travel (and free parking!).
There are just several pros and cons, I'm not sure right now. Obviously, I have time to think about it, the lady was extremely nice on the phone today and told me that I can take as long as I need to think about it. I've always wanted to participate in a clinical trial; I think it's such a great opportunity for me to be trying out a new drug (maybe) that could help so many people!
I'd love to hear your input on what you think I should do, or if you've participated in a clinical trial before. This is all new to me so I'm just processing right now. Thanks for listening reading.

Doctor Visit & New Vest!

Had my doctor visit today and it went pretty well (took some pictures for you). I had my PFTs scheduled for 10 and then I would see the doctor at 11:30. So, to start the very long day, I woke up a little before 6:30 so I could get in a set of treatments and some breakfast before I left around 7:20. I got about 20 minutes into my drive when I heard on the radio that traffic looked terrible on pretty much every way into Chicago, so I was not looking forward to my drive! I got backed up in traffic a LOT sooner than I normally do and at one point I was going 30mph and it felt fast. Needless to say, it was a long ride, especially because I had to pee the whole way!! (Sorry for the TMI)

Lovely Chicago morning traffic

Luckily I left with enough time and I pulled into the parking garage at 9:30 and checked into 5E-Pulmonary Procedures around 9:45 for my PFTs at 10...just in time! My pulmonologist wasn't very friendly or encouraging today, so it wasn't very exciting doing my PFTs. Sometimes you get the people who really encourage you and tell you you're doing great, which really helps sometimes, but this lady was pretty crouchy - oh well. She left the room several times, so I took a couple pictures to show you what the full PFT machine looks like. (If she was nicer, I would have asked her to take a picture of me in it...)

The machine on the right is where I sit. On the left is where the pulomonologist sits
and gives me instructions on how to breathe. All of my breathing is recorded on the computer
and made into graphs. 

The blue piece is what I put in my mouth (and I have nose plugs)
and it records all of my breathing.

When some of the tests are performed, the door is closed. Right now the door is open.

I did pretty well, overall, on my PFTs. They didn't go up like I wanted them to, but the best thing is that they didn't go down. The percentage in my small airways went up significantly, thanks to Advair, so I'll be continuing that. I updated everything in my "Health Stats" tab, but here's a quick overview. 

FEV1: 2.70L - 86% which is up a little from last time :-)

FVC: 2.97L - 76% which is pretty much the same. 

I did about 8 different tests today in that machine. I did a few in the beginning, then they give me a nebulizer of Albuterol and she tested me about 4 or 5 more times after that. In the test I breathe normal for a couple breaths, then I take in a deep breath and blow it out as fast as I can, for as long as I can (meanwhile the pulm. is saying "BLOW, BLOW, BLOW!") and then I take a deep breath in at the end, and I relax. I did this about 8 times, plus several different other breathing techniques/tests in between. I was pretty wiped out after, but it felt good. I was able to cough up some lovely samples for them, which they always love. 

After my PFTs were finished around 10:30, I walked down to 4D-Pulmonology to see my doctor. I actually got in a little early to see her, which never happens, so I was pretty excited. (But I missed you, Penny!) 

My doctor's huge binder with all of my files! Lots of paper
work every time. 

My doctor was very please with me keeping my weight the same and keeping my lung function stable/slightly up. She pretty much told me to keep doing what I'm doing and to keep it up. I'm hoping that with continued exercise and compliance with my treatments (haven't missed one since July 30th!) that hopefully my numbers will start going up instead of staying where they are every time. We talked for a while about everything that's been going on and keeping healthy. We decided not to change anything that I'm doing because it seems to be working. As I mentioned before, since the Advair seemed to have a positive affect on my small airways, I'm going to be keeping that up. So I'll be back again in three-four months, depending on when I can get back in. Probably sometime in the beginning of winter. So after we were done chatting, which lasted a while (it's pretty amazing to have such a great relationship with my Dr!), I finally headed out.  

This is the view from the parking garage, right behind my car.
Of course, it's always packed so I had to park on the top level. 

Of course the traffic is still there when I leave at 1:45!

Ahhh! Now this is more like it. Back home! :-)

When I got home, I had a little package waiting for me....my new PINK vest! Here it is!

Out Run CF

Since joining CysticLife and getting myself more involved in the CF community, I've come across this new awesome opportunity for exercise and CF awareness! The best part, is that anyone can do it! I've just started exercising (mostly walking) and this is something I plan on participating in this year, hopefully running! I am inviting every single one of my readers to register, too!


The first Out Run CF Virtual Race was a huge success. Runners and walkers from all over the world came together with one thing in mind, to Out Run Cystic Fibrosis! This fall, on October 1, 2011, we plan to do it again. The Rock CF Foundation and CysticLife are joining forces, once again, to bring you another Out Run CF Virtual Race.

In case you missed out last time, or need a refresher, here is how it works. Anyone and everyone is invited to participate: Fibros, Cysters, parents, spouses, friends, extended family, you name it! Participants will find a route near their house. Then on October 1, 2011, EVERYONE will lace up their sneakers and hit the pavement in their Out Run CF shirt (Each registrant will receive a t-shirt unique to this fall’s race from us in the mail).

No distance is too long, or too short. YOU pick YOUR mileage. 1 mile? 5K? 10K? 10 miles? Half Marathon? Marathon? It’s up to you! Nothing is too fast or too slow YOU pick YOUR speed. We just want to get the entire CF community out of their houses and into their running shoes on the same day, for the same cause.

Registrants can blog about their training, ask questions, and share tips on CysticLife.org. We want the entire site to be plastered with talk of exercise, running, and encouragement. On race day, we want people to post their times and their experiences. Let’s make this Virtual Race even BIGGER than the first one! Let’s make it the biggest race the community, and the world, has ever seen!!

So here again are the hard facts:

Who: Everyone
What: Outrun CF Virtual Race held by Rock CF Foundation and CysticLife
When: October 1, 2011
Where: Anywhere
Why: Because anyone can run—whether it’s for a minute or a marathon! Together we can Out Run CF.
How : Register at http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-fall-edition-2011

Helpful sites to get you started:

CysticLife.org—Blog about your progress, ask questions about training to the community, post Airwaves with your daily run updates, connect with others to encourage them and be encouraged

Dailymile.com—Make and account and join the Rock CF/CysticLife group to track your miles and keep track of others!

Facebook.com—Join the Out Run CF group to see how many people are outrunning CF and connect with them! 

Winner

Looks like you guys want me to get a PINK vest! I had seven people vote and only one person chose blue. Several people have told me the blue is a very 'medical' looking color, and I have to agree with them...so pink it is. And for those of you who know me, I'm not one for pink, but it's much more fun than a black vest! I'll be calling the Hill-Rom company at the beginning of next week to requesting a new vest, so I'll keep you updated. And I'll definitely be posting pictures if/when I get it! Thanks to those people who voted. :-)

Losing Hope, But Gaining Motivation

Well, let's face it - it's more than half way through August, most schools have started this week or will be starting next week and I still don't have a teaching job...I'm losing hope. On Monday, I was all pumped about still applying because I was so sure that I was going to get one of those last minute positions that come up. So I emailed over twenty principals about job postings, and I've applied over and over each day online, and all of the responses I've gotten are ones saying, "Thanks for applying, but that position has been filled. Try again next year." They don't exactly say 'try again next year' but pretty much. It sucks. I'm more upset at the fact that I'll have to go through this entire (May-August) application process again next year. It's so frustrating! But, I'm very excited that I still have my teaching assistant job that I had last year, at the same amazing school. :-)  I absolutely love the school I worked at last year (it's where I did my student teaching, too). I'm excited to go back and see all of the kids, and start getting the educator part of my brain going again - it feels so good!

Another positive about me keeping my assistant job is less stress. I think that whenever I get my first teaching job ("maybe next year" -- man, I feel like a Cub's fan!), I'm going to be so stressed out about doing everything right. As an assistant, I still try to do my best with everything I do with the kids, but I definitely don't have as many responsibilities as a classroom teacher.

I think this will be a good time for me to really focus on my health and exercise. Not having the added stress of my own classroom is giving me extra motivation to kick my butt with treatments and exercise. I have a doctor appointment next Thursday - a week from today - so I'm really anxious to see what my PFTs are. I haven't been exercising like crazy, but I've definitely been doing more the past couple weeks than I ever have, so I'm hoping that's helped. I've also been completely compliant with my treatments for three weeks straight - which doesn't sound like much, but it's always been harder for me to get both treatments in on the weekends with stuff going on, but I haven't missed one in three weeks! :-)
If my PFTs don't go up, I'm going to be really bummed because I feel like I've been working my butt off. But I just need to keep doing what I'm doing and I think, and hope, that I'll start to see some awesome results. :-)

The Vest

I got my first Vest when I was in 7th grade and I hated it! I hated that it made me cough and I would try to use every excuse in the book not to use it. It was big, bulky, very heavy and loud.

This is my freshman year of college - doing my treatments in my dorm.

Today, my Vest is portable, quiet and small.

You can see my traveling bag in the background (kind of dark).

If I didn't have the Vest, I definitely would not be as healthy as I am today.
I need to get a new size of the actual vest itself and now they have them in different colors and designs that you can put over the machine. I love this idea for children because it makes the machine a lot less scary and 'medical'. As I was looking on the Hill-Rom website, I found a couple cool links.
*To get the different "skins" for the machine
*The different color vests
*Need a reminder to take a break and cough? Or how about a Vest in Spanish?

I think it's really cool that they are adding all of these new features to this equipment. It definitely makes it more kid friendly (and adult friendly!). I'm not going to lie, this NIU skin looks pretty awesome! And since I have to get a bigger size for my vest, if they allow me, I'm totally going to pick a colored one. So, the big question is....light blue or pink?? Take a second to vote on the top, right hand side of the blog. I'll post some pictures when I get it! :-)

Gettin' Movin'!

The first day back to work is on August 30th for me, so from today until then, I have nothing to do. Since I have all of this excess free time, I've decided now's my chance to stop talking about exercising and actually start doing it! I started last Thursday and Friday with a two-mile bike ride each day. It felt good to get out and do something, but the bike ride felt like more of a workout for my legs than it did for my lungs.
Now, I'm not trying to exercise to lose weight because with CF losing weight is not a good thing. My purpose of exercising is to get my lungs working to get more mucus out than just what I get out with my treatments. It's also good to exercise for my bones and overall health for my body - which is why I'm calling it exercising instead of working out. And I'll admit, I'm lazy. So I've been talking about getting up and doing this for so long, I'm finally glad I'm taking some action.

After I realized that riding my bike wasn't working my lungs as much as I wanted it to, I thought about walking. Tim's aunt and I walked for a little while on Friday night and it was a nice start. Eventually, I think I'd like to start running...yes, that's right, running. And for anyone who knows me, you would know that I hate running. But I feel like it would have the best results for me, so my plan is to work up to that. I can barely run a block without getting out of breath, so my plan is to start walking a lot, then maybe start jogging a little bit while walking, then hopefully I'll be able to increase my stamina.
To throw in a little variety and fun, yesterday Tim and I went out to Game Stop and I bought Zumba for the Wii. I've heard from many people that it's a lot of fun, so I thought I'd give it a try. On crappy, rainy days like today where I don't want to go outside, I think something like that would be great for me. I tried it today for 20 minutes, and I haven't stopped clearing my throat since! It didn't make me have a huge cough attack (which I don't mind because I hate those), but I could definitely tell that it got some stuff moving around in there. YAY! Let me tell you, I probably looked like a complete fool trying to mimic the moves on the game, but hey, if it's going to make me feel better and get my PFTs up, then I'm all about looking like a fool for 20 minutes a couple days a week! I have a doctors appointment coming up in a few weeks and that's my motivation right now. I'm due for a full PFT so I really want to kick it's butt this time since the past couple of doctors appointments there hasn't been too much change (which isn't bad, but I'd rather see my lung function go up than stay the same). The full PFT is much more in depth and done only once a year, as opposed to the smaller, simpler test that I get done every time I see my doctor. Something else that I want to try is mowing the lawn. I know, this sounds stupid to say that I'm going to try it, but I've never used a lawn mower in my life. Since we live in a house, we now have a yard that needs mowing every so often. We also live on a corner, so we have a decent sized yard that needs to be cut. Since Tim's been so busy at work, and working a lot of hours, I felt bad having him do it after working all day while I'm sitting around all day doing nothing. So as soon as it decides to stop raining this week, I'm going to have Tim show me how to use the lawn mower and I'm going to give it a shot. It's more opportunity for exercise and it's something that needs to be done, so why not?!
My only worry is that when school starts up again, I'm not going to exercise as much, or not at all. That's why I'm trying to find a variety of things to do, that I also enjoy, so that I am motivated to keep it up. I also think it's more fun and motivation to exercise with a friend. I've had a couple people volunteer to start walking with me, so that's been good. I'm just hoping that I can get into a routine, especially when work starts up again and keep this going...and never stop!

You Know You Have CF When...

This is something I found off of my new favorite site, CysticLife. Obviously not all of them apply to me, but most of them do! Enjoy!
*You do a happy dance when you hack up a huge wad of mucus, show your dad, and he gives you a congratulatory high five.
*You know more medical terms by the age of ten than most people know their whole lives.
*You have your pharmacist, family doctor, CF doctor, the emergency room that you always use, and your medical insurance company as numbers 1-10 on your cell phone's speed dial.
*You have multiple scars from PICC lines, IVs and other 'experimentations' as the doctors like to call them.
*You are so used to getting your blood drawn that you are the proverbial 'test dummy' for all the new nurses fresh out of college - you don't mind, do ya?
*You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your friend's dorm, in their car - hell everywhere!
*You can smell smoke hundreds of feet away and go searching for the source so you can thump them upside their retarded heads!
*You adamantly think that smokers are some of the dumbest people you know!
*You laugh at those who bitch and moan from a common cold or worse yet, stay home because of it!
*You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live - for about 1 milli-second then you jump for glee because they came up with something to help you breathe!
*You can instruct the nurses how to work the IV machine at the hospital.
*Some of the most memorable times with your friends is hanging out and wasting time at the hospital.
*You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.
*You make people wince on a daily basis because of the sound of your cough.
*The checkout lady at Wal-Mart has confidently told you that she just got over whatever I have and Theraflu worked for her, which you calmly and sarcastically say, 'I will make sure to tell my doctors.'
*You can sleep through anything - you perfected the skill by being shaken by your Vest all of these years.
*You are a multi-tasker by need. While you're doing your Vest you MUST eat breakfast, do your nebulizers, homework, make-up, straighten your hair and have a conversation with your mother about your most current ache in your chest all at once or it would never get done.
*You learn by the age of 15 that life is a gift and most people don't see it's pretty paper.
*You have used your Vest multiple times as a torment device for your dog by blowing air at him and watching him try to catch it in his mouth, entertainment device for kids because a shaking vest is a fun 'toy' and a laughing tool for adults when you try to talk to keep up with the conversation, even on the maximum setting.
*Many adults have commented to you that you are very wise/mature for your age.
*If Albuterol and Xopenex were living things you would marry them because according to you, they were sent from heaven by God to us CFers for a little help in the breathing department.
*You laugh at your friends and their newest drama - ha! Don't we all wish it was THAT easy!
*You are constantly on the go, realizing that time stands still for no one.
*You feel as if there is ALWAYS someone worse off than you somewhere.
*You truly get pissed at people who don't put 'yes' as organ donors on their driver's license.
*You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after.
*You are more scared of losing your loved ones, family and friends than you are of dying yourself.
*You realize at an extremely young age that you can buy everything but time and as a CFer, that is one thing you would love to have.
*You get asked on a daily basis how old you are - and you just have to laugh when people rudely say you look 12 and not 18.
*When dogs and babies lick your ever-so salty skin.
*After working out, or just being in the heat, you have a visible film of salt covering your entire body.
*You look at food labels and say things like, "Sweet! 600 calories per serving!"
*You are so tired of people saying "have another smoke!" after you finish a coughing fit, and you wonder if they are worth the real explanation.
*You have an extra dessert and everyone wonders where you put it, because it sure doesn't go to your hips!
*You make sure you don't go to the bathroom BEFORE you get weighed at clinic - every ounce counts!