Tuesday, July 30, 2013

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 :)


  1. This is awesome news Anna! I'm sure you have tons of questions and general emotions banging around in your head all the time! I'm rooting for you from afar but know this you're doing the right thing and these are the first steps!! Love Ross..

  2. Thanks for the update. The picture was a nice bonus. You're looking good.
    I am very impressed with the difference between response times for Duke vs. Colorado. Looks like you made a very wise choise. Once again, thanks for posting this update on Facebook. I have not been receiving the e-mail notifications of blog updates. Love, Kay