This train is a Rollin'

There's news!!!  We got a call from Duke on Thursday morning telling us that they want me to come for testing.  This will happen for the entire week of Aug 5th.  It is such a relief to know that things are moving and the process is really starting.  (Ok so sending in my info was the start but this feels more real)  I am happy that things are happening but, being the anxious person I am (actually probably just being human) I am a bit nervous and freaked out about going for a week of intense medical testing.  I have heard it is basically the most thorough physical you have ever had.  I think it will be more like my super crazy, stressful day I had at the hospital last time I was there.  For those of you who don't know about the day, I had an ECO (heart ultrasound), CT scan and MRI with contrast all done in one day, as well as the desire to clean myself (aka shower!) while being hooked up to a million things and needing to wait, a blood clot scare and a soda being spilled all over my entire room, leaving it very very sticky even after having housekeeping mop it up.  Oh yeah and I also had a surgery consult (with an intern who had no idea what he was talking about and lead me to believe I would need a different and much more invasive surgery than the doctors had talked about) and a meeting with my social worker.  Yeah I think it will be like that.  Though at least we can hopefully leave out the needing to shower and the sticky floor part so that should make it bearable!  Did I mention this is a week long as in 5 days in a row of this (yikes!).  This means the chance at new lungs and hopefully a new and way better life so, well.... bring it on!

We received a transplant information packet and testing schedule for the week in the mail on Saturday from Duke, (yeah they are that fast, Duke (2) UCH (0), you read that right we still have yet to hear from university of Co hospital) which really helps me to feel a lot better about this process.  I still have a million questions and now know I have to do more nasty tests that I hadn't even thought of but at least I know what I have to do rather than just wondering.  This lovely packet also contains a novels worth of information I have to fill out which for me is basically torture! (okay so maybe I exaggerate a lot, but hey get used to it, I enjoy being a tad lot dramatic!)  Its filled with those pesky scale type questions, like on a scale of 1-10 how bad is your pain. ( I can't even decided what kind of laundry detergent to buy, how I am supposed to figure out something as subjective as pain level, I don't know what a 1, 5 or 10 feels like!)
Anyway thats the excitement that is happening in my house!  (yeah I know, you wish you were here! its pretty dang exciting :P )

Other than waiting to go to Duke there isn't any more transplant related news.  I have been looking at videos about transplants online a bit.  They are interesting to watch, a little freaky but overall I like seeing them.  I have realized a thought process I have that is pretty funny.  In a lot of the videos people or doctors will mention that they have a lot of really sick people coming in for a transplant.  When I hear this I automatically count myself out and start to worry a little that I won't be able to get a transplant because I am not very sick.  When I stop and think about it rationally I realize that I guess I am really sick, it is crazy to me that  a) I don't think I am very sick , and b) I have trouble grasping the concept that I AM really sick.  I am only 21 years old, supposedly the prime of my life, on oxygen all the time and have an FEV1 (lung function test result) of 25% or less (100% being the predicted amount for the average girl my age, weight and height) not to mention all the drugs I do and countless lock ups (aka hospital stays)...so yeah I think that means I'm sick.  I guess this is what you get when you have dealt with an illness your entire life.  The other crazy thing I have been doing is getting freaked out about the statistics of lung transplant survival.  There is a part of me that doesn't want to go through with the surgery because I don't want to put a "limit" on my life.  Again when I think this I find myself stopping the other part of myself and I am like "uh Anna there already is a "limit" on your life and it is way worse odds then the whole lung transplant thing, plus you have beat the odds so far, this isn't gonna be any different."  Then I'm like "oh yeah I forgot about that"

In other news I was able to make it to the Toby Keith concert this weekend, which was happy!  It seems like all our fun events of the summer just so happen to occur two weeks after getting out of the hospital, I was unable to attend the last one (aka rockies game) because I didn't make it 2 weeks before I had to go back.  This time I did make it though it was a close call as I started to feel a bit sick earlier last week.  I never got worse then just the beginnings of sick feeling so I decided to wait it out in the hopes that I could stay decently well long enough to make it to the weekend and go in on monday if need be.  As I said above I made it!  (and actually past because I am not calling the docs today, I feel a little bad still but not terribly bad so I am just waiting for my apt with them on Wednesday)  As far as the concert goes, I am glad I went but it was not the greatest concert ever.  I had never really listened to him at all (only 2 military songs because Dave likes them and the red solo cup chorus, cuz well most people seem to know it) and after listening to his songs I decided I am not a huge fan, most of his songs are so inappropriate and pretty derogatory towards women, which isn't really the way I roll.  (I also couldn't really hear any words, it was mostly just a jumble of sound, so who knows what he was even singing)  I did have fun though and am glad I went, it was a good experience!  I also decided that it looks really fun to be down in the standing area and have decided that I want to do that sometime when I get my new lungs.  (of course I will need to wait a bit and go in the summer and be outside and try to stand in a less crowded spot to avoid the germs that come with large crowds but hopefully it will be something I can do, at least once!)

I'm going to try to start adding pics this one is from the concert!

Well that's all for now folks!

See you later :)

When You're Gone

There is still no news from either of the transplant teams.  Hopefully they get back to us soon but I guess this is good practice in being patient.  I will need a lot of this in the months to come.  I have been home for a little over a week now.  I am still have trouble (anxiety wise) going places with my oxygen but it is getting easier!  With nothing new going on lately I thought I would take this opportunity to talk to all you wonderful people out there about the precious gift you have the opportunity of giving to your fellow human.  

Yup on todays episode of new windows we're talking about organ donation! (audience applauses :P )  For some reason people do not seem to like to think about their demise, but the truth is that every single one of us will die someday.  When that day occurs we will no longer be using the body that we have here on earth and that presents us with the perfect opportunity to give it to someone else.  Enter organ donation!  With the increase in medical knowledge and technology doctors are able to reuse many different organs from a deceased person to save the lives of others.  

I had never given a lot of thought to the world of organ donation and how it worked until very recently, but I have been a donor for years.  I felt that it was the right thing to do and pretty cool too!  When you chose to become a donor all you are saying is that when you die, (which again happens to all of us!) doctors can use your organs to provide a new life to other people who have not died yet.  In a lot of cases, like mine, this gift of an organ provides a new and better quality of life!  The best part is, it takes no sacrifice of your own, unlike when you give to others in your life.  How sweet is that!  You are gone so you aren't going to miss any of your "parts".  I hope that all of you reading this will consider becoming a donor if you currently are not.  After all you are getting to see what an organ donation can do first hand! (or at least the hope of it so far)  If you have questions I can try to answer them but I am no expert.  You can also check out organ donation for yourself and register at donatelife.net If you live in Colorado you can go to donatelifecolorado.org

Well thats it for today folks.  Hopefully we will get more news soon and I can get back to my novel posts! (I know you are really missing them but hang in there :P )
Until next time!
Tootals :)

Storms ahead

Hello again blogging world! I know you were really starting to miss me!  I have been a bit busy the past few days and have loads to tell you about.  (I know crazy right, the funny part is I can't even figure out why I have been so busy it doesn't really feel like I have accomplished anything.)  

First things first, lets start off with the most important news of all......I GOT AND IPHONE!!!! (yup thats the most important...obviously :P )  Okay so its really not important at all but it is exciting!  After being the loving owner to a beautiful pink chocolate "dumb" phone for 7 years I have finally moved into the world of smart phones.  It is pretty nice to have, though I may have a slight addiction.  (who would have thought especially since I already have had an iPod touch and and iPad.  The only new part for me is having a phone and apple device in one.)  I know this is what you all are dying to hear about but in the interest of not tiring out your poor eyes I will move on to more "boring" things.

I have made some progress on solving my o2 problem.  I got several small tanks delivered yesterday and have found that they do, in fact, last me a few hours out and about.  I have also been working on going out.  I still get anxious as we drive to a place, and before getting out of the car, and while we are in the place, and sitting at home thinking about going somewhere, and any time I go outside and see a person, and at the thought of seeing a person and....okay so maybe the anxiety piece is still kinda bad, but the important part is that I did it, I went out in public and I keep going so it will only get easier!  I have gotten better at navigating the world of home with my snake friend and can pretty much get anywhere in the house now.  I will be glad when I can finally ditch this thing though.

In the transplant department there is finally some news!  On sunday I got the idea to have a family meeting to discuss the situation and get everyones opinions on our options.  After discussing for a while we all came to the conclusion that faster seems better and that I should try to get my transplant done at Duke.  Yesterday the call was made to the docs to get my info over to Duke which has been taken care of.  Now we wait to hear from Duke.  

Getting my transplant done at Duke will mean moving to North Carolina until I get my transplant and until I am recovered enough to not need frequent doctor visits.  We decided to go with Duke because they have a really good success rate and their wait time is the shortest.  I am really hoping that I will be able to get my lungs in a couple of months.  I am sad to leave Colorado and everyone here.  I am also sad what it means for my schooling, I would not be going this fall and possibly spring which sucks since I love it so much.  But as Beth says "there are things you have to give up in order to get new lungs."  (If it were up to me though the only thing I would give up would be my old lungs!)  Unfortunately that is not the case.  I am excited though at the same time because for the first time in my life I am having to give up stuff for my health, while knowing that I will get it back and more!  I may not be able to live with my friends next year but when I do finally get to join them again I will actually be able to keep up (and maybe pass them).  I will be able to go on hikes and camping trips, explore other towns without having to think about the elevation, actually go swimming and not just sit in the pool, show people my hometown and be able to take them around and even be able to leave the couch at Thanksgiving and that makes it all worth it!  

It is amazing to me how much my life has changed in the past few weeks.  I have always been able to see the light at the end of the tunnel but that light has changed.  It is no longer the light of heaven but the light of life, real, adventurous life, I think, the life I was meant to have!  I know heaven will always be waiting there for me when my time has come, but for now I actually get to do the things I have dreamed of doing, that I figured I just had to let go of, here on Earth!  So yes Duke has its drawbacks and sacrifices but if that means I have a chance at having a new life in a few months instead of a few years, I'll take it.

Now on to my last topic and the reason for the title, Storms. (Warning its a bit "churchy" ahead so prepare yourself!)

At church this weekend  the message was about storms hitting our life.  The teaching was coming from the story of the two men who built houses one on a rock and one on sand.  Most people are probably familiar with the kids song about the story but if you didn't know it is a parable from the Bible.  The story is talking about God's teachings as the rock and the world's as the sand.  The house is you, or your life.  Basically what the story tells us is that if you build your house upon God and rely on him and try to make your decisions based on his teachings, he promises you will not be crushed when the inevitable "storms" or trouble comes.  This has been a very important promise in my life and this weekend was a nice reminder of that.  As I sat there in church (braving the crowd with my oxygen!) I felt so thankful.  My life these past few years has been pretty stormy, and yet I am still here, not only alive but happy!  Yes I have my bad days but most of the time I feel pretty happy and it really is due to God holding me up (even if part of his holding is coming from my drugs :D ), keeping me going and giving me the reminders just when I need them.  I feel the need to share this on here for those of you that already believe but are unsure of the whole not letting you be crushed thing.  I want to let you know that God really won't let you be crushed, I have seen this in my own life and know it is true.  Will he let you be hurt, yeah, but in the end you will be okay!  I don't know who all out there is reading this or your story but if you feel like I am talking to you just know God is there with you it might be overwhelming at times but God won't let you completely fall apart.  

By the way although I don't mention God a lot he is a HUGE part of my life and the only reason I am still here.  He is also one of my favorite topics to discuss so if you want to discuss this more send me an e-mail I would love to talk to you (even if it is just to argue with me, I love me a good debate!).  I do enjoy regular e-mails as well  I have not mentioned before but please know you can contact me anytime with any questions or comments you might have.  I also read the comments that go down on here so that is a way to talk with me as well!  (lets not argue in my comments though, I don't really think any of you lovely blog readers would but you know, better safe than sorry!)

That about sums it up.  More to come later guys.   
Love you all!
peace out home dogs!

Frenimies

Yup, I got me one of those!  I need them to be around yet I also can't stand them all at the same time.  I'm not sure how they feel about me but I like to think the love/hate relationship is mutual.  We are going to have to work on things because it looks like we are in it for the long haul.  Yeah you got me, its my oxygen.   

This whole 24/7 oxygen thing just is not working for me.  I have been home for a little over 24 hours and it is turning out to be a rough adjustment.  Being home is not too bad, though it is weird to be hooked up to something all the time.  I am walking around the house with a lovely little (but super long) snake following me everywhere I go (though let me tell you this "snake" is rather dumb because it keeps tangling up on itself and getting caught around objects).  I now have a new found respect for dogs on a leash, its no wonder they pull so much or flat out refuse to walk on the leash as my dog likes to do, it sucks, they are right, being off leash is way more fun.

The real problem is leaving home.  I am having a hard time figuring out a system for getting oxygen that both comfortable and gives me a long enough window and of course my, not quite fixed yet, social anxiety doesn't help things any.  Today I went out into the "real world" for the first time with my o2.  It was not as bad as a thought but was not a pleasant experience by any stretch of the imagination.  I think this has more to do with my anxiety than with the o2 though.  I already deal with anxiety in social situations (basically anywhere there are people) now I am forced to deal with actually standing out (instead of the crazy, make believe stand out that the crazy side of my brain or "whitey" as I call her likes me to believe).  The interesting thing was that no one asked me about it.  Actually I didn't really think people would ask, it was just odd seeing that, that was indeed correct.  Its like "come on people I know you are wondering so just say it". I almost want to write it across my forehead, (Waiting for new lungs, are you a donor?okay maybe not the donor part) then at least it is out there and I know people aren't wondering.  That is one thing I have learned from this, maybe I should be more inquisitive of people who are "different".  At least if they are like me.  I am fine telling you, the worst is when I feel like you are wondering but aren't saying anything.

As far as the actual transplant process goes there is no new news to report.  We are still just waiting on hearing from the University of Colorado transplant team.  We have also been looking into other centers and trying to decide where would be the best place to go.  It seems like Colorado has a pretty long wait time, which could be less if I were to go somewhere else, Duke for example.  It is hard not knowing what my life will look like even a month from now.  I look forward to when this is all over with and I can be out on a run instead of stuck at home detangling the snake monster yet again!

beep, beep, beep

With nothing new to post in the world of transplant and the fact that I am still in the hospital and a bit board I figured it was time to back this thing up and give anyone out there wondering a quick, History of Anna (be sure to read that with the voice of one of those commercial voice over dudes! Trust me it adds to it!!)

So Grab on, here we go!
I was born, obviously, I'm pretty sure everyones story starts out the same.  I was born in Colorado, one of the few states at the time that checked for Cystic Fibrosis in the newborn screening.  My test was positive so further tests were done and it was confirmed a few weeks after I was born that I was the lovely "winner" of cystic fibrosis from the genetic lottery!

A quick note for those readers out there that are lucky enough to have no idea what Cystic Fibrosis, or CF as it is shortened to, is.  CF is a genetic disease that affects the mucous membranes of the body.  If you want to get all technical I could tell you that it specifically effects the protein that makes up the chlorine channels, causing them to either not work correctly or in some cases be nonexistent and is a recessive disease (meaning you need two mutated genes to get it).  This lovely mutation creates not so lovely thick sticky mucous that gets stuck in the various organs and organ systems it effects, mainly the lungs but also the digestive system.  The teeny tiny error in a CFers genetic code leads to some huge consequences, frequent and sever lung infections, digestive problems, malnutrition and insulin deficiencies being the main ones.  There is currently no cure for CF, at least not for most of the different mutations, but there are many medications that can help to slow the process.  In the end though, CF leads to death (though as I like to say, life leads to death....well that and cancer! )

Sounds fun, right?  

Okay children gather round as we dive back into this fabulous tale!

Due to my inability to develop a fantastically advanced memory at a young age I do not in fact remember most of my childhood so bare with me here as this information is slightly ...fuzzy.  I do not believe I had many problems with my CF as a young kid.  I did take enzymes when I ate and did nubulizer treatments I think daily.  I also did what is called CPT, which is where someone, my parents, would pound on my chest to help loosen things up. (I have no idea what it stands for I would guess chest percussion therapy...?)  When I was I think 4ish I got the wonderfully exciting vest machine (it is actually a bit exciting) which replaced CPT.  As far as hospital stays I did not have many, and none for "normal" CF reasons.  I was in the hospital I believe for testing when I was really little and then again at maybe 3 or 4 because I got pneumonia and was not getting better.  I also think I was in the hospital after having a bronchoscopy, where they put a camera down your throat and look at your lungs.  During the bronch they tried to open up my lungs more and instead ended up releasing a bunch of bacteria which made me pretty sick.  Again I have no actual memories of any of this so it is purely what I remember being told but overall I think I had a pretty healthy and normal early childhood.

And then I turned 9...
at 9 years old my friend CF decided to awaken and get busy.  It launched its first attack on me in October of 2000.  After seeing the doctor for one of my regular check ups he decided it was time for me to join the world of other CFers and experience the wonderful invention of a "tune-up".  A tune-up is where you take a person with CF from their normal life, put them in a hospital for at least 2 weeks and pump them full of drugs, while doing nublizer and vest treatments 4 times a day and shoveling in as much food as possible in a full fledged counter attack on CF.  Now I know how great this sounds to the normal person, but imagine for a second that you are a nine year old kid who frankly doesn't feel sick at all.  (Oh yeah and its also almost Halloween)  In addition to the horribleness they call the hospital, which I like to refer to as jail, it was also discovered that I was the happy home to the superbug MRSA.  This got me, at the time, a one way ticket to the "isolation zone" a crazy world confined to four small walls, where visitors wear yellow "banana" suits and the only access to the outside world is a window with built in curtains that faces a parking garage.  Again did I mention it was almost Halloween and I was 9.  Then because this wasn't exciting enough I was put on steroids, which don't mix so well with me.  These drugs give me a ton of energy, make me CRAZY and send my blood sugar through the roof, we're talking high 400s to 500s here (normal is 70s-low 100s).  This made for a very unpleasant experience for both my mother (who stayed with me) and myself.  Luckily I have mostly blocked out this and subsequent hospital stays, though I do remember some details, trick-or-treating in my room by knocking on the bathroom door and having my mom pretend to be different people and giving me candy being one of them.  Luckily as most policies in the hospital like to do, the MRSA policy changed, allowing a person to be taken off isolation if they had a negative MRSA test enough times.  I thankfully only tested positive for MRSA that one fateful October so when the policy changed I was taken off of isolation and let me tell you what a world of difference that did for me psychologically.  There is just something to seeing people in normal clothes and knowing I can leave my room if the desire were to strike.  

I was in and out of the hospital a few times a year from then on.  It became a routine almost, go in for a check-up be told I needed a tune up, be pumped up with drugs, go crazy, get out, be happy and then do it all again.  

By 7th grade the decision was made that I needed more support nutritionally and surgery was scheduled to have a g-tube put in.  I have had it for 8 and a half years now and have finally made peace with it.  I also, thankfully, don't really remember not having it or the entire process of getting it which helps.  I do know two things; it hurt and it took a while before it stopped hurting. I have just recently started using my g-tube every night while I sleep, which is the typical CFer way to rock the tube!  The night feeds are helping me though, so although my lungs are going downhill my weight is the best it has ever been! (well almost)

As far as my lungs go they are doing pretty bad, obviously.  In February or 2011 I got pretty sick and was in the hospital for a few weeks.  During that time it was discovered that my right lung had pretty much collapsed, we tried to get it to reopen but with no luck.  Since that time I have done fairly well and felt decent for me but have definitely been very limited in what I can do.  This past winter I made the decision to move to Phoenix for school.  I loved it in Phoenix but unfortunately due to the lower elevation had a lot of trouble when I would return home.  I ended up getting pretty sick over spring break and never really recovered from that.  That brings us to now.  I am currently on my second hospital stay since I have been home for the summer.  I was only home a total of 13 days before I felt the need to return here. I am also on oxygen 24/7.  I had known oxygen was needed when I returned to the hospital the last time but hoped I could be weened off of it completely.  This has not been the case and instead it is seeming that I will be entirely oxygen dependent until I get my new lungs.  Hopefully that will be sooner rather than later but until then I am learning how to deal with yet another aspect of my CF. 

What do all those crazy words mean????
Here is a list, with explanation of the various things I do on a daily basis for anyone thinking a nebulizer is some futuristic zombie tranquilizing gun and the vest, is the latest fashion trend that only CFers seem to be in on.


     Enzymes: Yes these are exactly what they sound like.  They
              are digestive enzymes to help replace the ones     
              that my body can't produce.  I take them any time I         
              eat.
    The Vest: It is indeed a vest though I would not say it is    
              very fashionable.  The vest part hooks up to a 
              machine and fills with air that is vibrated.  It 
              helps to loosen the stuff in my lungs.
   Nebulizer: Blows air through a special mouth piece cup thing 
              that holds a liquid, usually medication but 
              sometimes just salt water.  This liquid is then
              turned into a vapor and breathed in.  This helps my 
              lungs either by loosening or thinning mucous or 
              delivering antibiotics, it just depends on what
              liquid I put in the cup.
      G-Tube: A small tube that is inserted through the skin into 
              the stomach.  It allows me to be feed formula by a 
              pump while I am sleeping.
     Insulin: Used to regulate blood sugar.  Most people make it
              naturally but if not it can be taken as a shot.

This is by no means a complete list but it gives you an idea of what I do.  If you have any questions please feel free to ask, I like answering them!

  
             

Hello Blogging World

My name is Anna (hi Anna).  Okay so maybe I'm not so new to this whole blogging thing (I'll admit I have had quite a few "rough" starts) but I am starting fresh and have a plan to keep this thing rolling,or scrolling, as I head down this new, scary, terrifying, slow, interesting, exciting and, probably a few feelings I haven't even thought of yet, path in my life.  

For those of you who do not already know or who are just now tuning (clicking?) into the craziness that is Anna I have officially decided to get a lung transplant (eek), or at least go down that road in the hopes that I get accepted and in a few short long months it all works out and I am the happy and, for the first time much more, healthy new home to a fabulous "gently used" pair of lungs!  

My hope is that this blog is a place for me to share my experience with others on a regular basis and without having to individually tell everyone of you what is going on with me (though I am sure I will do a bit of that as well!)  So buckle up and enjoy the ride!  

I have just started the whole transplant process and actually don't even think the official doctor talk between my current CF team and the transplant center has even happened yet so in the world of transplant there isn't really much to report.  

So in other news....

I got my port de-accessed and then re-accessed for the first time ever today.  (i'm not even sure those are the right terms but hey makes sense to me!)  I was pretty nervous about it but it went really well.  Taking off the first dressing made my skin, super itchy but this is the same as it has been with my piccs so I was used to that part.  The nurse put numbing cream on the site so it would not hurt when it got re-accesed, then I was free for a bit.  It was nice not having all the tape and tubing on/in my arm so I am liking that aspect of the port.  Putting the new needle in freaked me out a tiny bit but it wasn't bad at all. I am not sure if the numbing cream worked because I did feel the needle but it was super quick and barely hurt at all.   I'm not sure if this is just how it is with ports or if it wasn't numb enough, the times I have had the numbing cream for blood draws I did not feel the needle at all so I guess I will find out next time.  We left out the cavilon, a type of skin prep, since I am suspecting it may be the culprit of my allergy, again only time will tell.

Not much else to report on today, pretty much same old same old here in the Children's Hospital.  I think I will put a post up later with some of my background but for now this is all you get so enjoy!

Peace out home skillets