Thursday, June 26, 2014

The Plane!

Well the move has happened.  I am currently sitting in a bed at Duke no longer looking at the mountains but at dense lush forest.  Yes folks Anna is back in the trees.  I was flown to Duke Tuesday afternoon.  An ambulance picked my mom and I up at the hospital and drove us to the airport (we flew out of centennial airport not DIA)  There we got on the med flight.  It was a tiny little plane, there was a paper inside that I think told about the plane (I never read it) but it was for a learjet so I am guessing that was what we were on.  It was not bad, I actually kind of preferred it to a regular flight.  It was a breeze getting to it and on the flight, no waiting around at the airport and no annoying security.  Plus since I was on a stretcher on the plane I got a great nap!  No wedging up against the window for me!  The flight took a little over 3 hours (same as a commercial flight).  They told us this jet can fly just as high and as fast as commercial planes and it sure did.  We got to Durham around 10.  We landed at the regular airport here and were again taken via ambulance to the hospital.
The whole crew at the airport

On the plane, the part you can't see had two seats one for my mom and the other for our stuff!
Since I have been here it has been more of the same, waiting, for the most part.  I had an endoscopy, where they look at your stomach, and biopsy done yesterday, a PET scan today and will hopefully get a bronch done tomorrow.  The tests aren't too bad so far, except that my appetite has returned again, only they keep not letting me eat!  Oh well it makes it that much better when I finally can.  The plan is, as long as things are still going well, to release me from the hospital tomorrow since I don't really need to be taking up hospital space waiting for results.  So now we just sit and wait around and we know how I do with that.  Bronch results have been like a person waiting to see if they have cancer to me, oh wait that is exactly what we are waiting for this time and it doesn't really feel the same as waiting for bronch results.  To tell you the truth, it is actually easier than waiting for bronch results.  With a bronch they have no idea if you have rejection or not, it can only be identified under the microscope, there isn't a "rejection look" or other signs like there is with cancer.  The docs here are fairly certain it is what I have and are really waiting to find out to what degree rather than if it is cancer or not.  To be honest I am kind of hoping it is cancer, not because I want that don't get me wrong, but cancer would be an answer with a treatment plan, so I could move on.  I would love it if the test shows some other definitive answer that is not cancer but is much simpler to treat, but the docs don't seem to have other ideas that are high up there in possibilities so I can't imagine what that might be.  If the results are negative and don't show something else then who knows the barrage of testing I will have to go through to discover the source of my pain and why I had so little blood. 

As far as possibly having cancer goes, like I have said, we are just waiting to find out and we will go from there.  The good news is the kind they suspect is very treatable and they have seen it a lot and had a lot of successful outcomes, I am sure I am in the right place.  They are guessing it is a type of lymphoma that appears after transplant, usually in the first year or about 10 years down the road.  Why those two times my doc has no idea.  Anyway it is called post transplant lymphoproliferative disorder.  Unfortunately there really isn't a pretty webmd version of what this disease is but apparently it is an over growth of b cells, since my t cells are being attacked by my anti-rejection meds.  The good news is it is usually fully treatable and doesn't tend to come back.  As far as what that treatment will be in my case, we will have to wait for the results and hopefully have some answers next week.  Until then we wait (and eat in the few hours I can each day!)
Thats all for now folks

Saturday, June 21, 2014

White Water Rafting??....?

Hey bloggie friends! 
Okay so maybe I'm terrible at making blogollowers a thing, but changing nicknames is my thing (ask my poor dog, her nickname changes by the minute!)
Anyways I thought I would post a quick update.  I am currently in the hospital.  I am feeling a bit perkier this evening as this morning I was still pretty miserable, two weeks of feeling bad kinda does that to you, (especially when its pain).
I continued to feel sick into this week, which I was sort of expecting as we thought I was really dehydrated and it can take a while to rehydrate by mouth.  Unfortunately as the days when on I started to feel worse not better.  On wednesday we went to the doc and they did an x-ray believing my "drains" might be clogged.  It appeared that way on the x-ray so I was sent home with some human drainO and hoped to be better the next day.  I cleaned the pipes and still did not feel better.  On Friday I went to get labs drawn and noticed I was feeling even worse, plus my fogginess when standing was so bad I couldn't even see to get back to the car.  We called the doc and went to the ER. (at the right hospital, except its not but we'll get to that)  They drew labs again and found that my blood levels were SUPER low, my hemoglobin for you sciencie types was 4.  It should be between 12-15.  Its funny because I had just been thinking that morning or maybe the day before that I needed blood and boy was I right.  They gave me 3 units yesterday and BAM just like that my world came back into focus!  So I'm fixed right....nope

I still have the stomach pain and they are not sure why my blood count got so low which is concerning.  They have run a few tests and have discovered that I am likely having some sever complications of transplant, enter Duke.  It has been decided, this time not by me, that I need to be seen there, where they know my history and can treat me.  So come monday morning I'll be packed up and shipped off to Duke.  Its kind of a bummer because its so far away but it will be good to be where they can treat me best (and probably won't try to give me my prograf with my other meds!)

I'll post again in Durham, tell you about my trip! 

Tuesday, June 10, 2014

Rough waters

Warning: get your Kleenex ready, cuz it's about to go down, this post is real!!! Okay but in all seriousness this post may be harder to read for some.  Life has it's ups and downs no matter what the circumstances.  For those of you who want to continue to believe that I am happy all the time and always supper glad I have new lungs then click on by but for the rest of you here we go.....

So as it sounded above I'm kinda having a bad day.  I have been feeling nauseous a lot again lately and today/ last night my stomach has been hurting.  It was doing this last week too and frankly I'm kind of fed up with it.  For these past few days having new lungs hasn't really made a difference for me, I spend all my time on the couch with the heating pad not feeling good... But hey at least I can breath while I feel like puking! 

Anyway, it's just sort of annoying.  I think everyone hates it when they don't feel good and I've had a lot of bad days throughout my life.  I kinda wish I could get a get through life pain free card about now.  Its also frustrating because I can't eat and yet I want to but then as I go to eat something the nausea intensifies.  All I can get down are my pills, which ironically is probably the culprit of this crappy feeling.  I switched my tube feed mix today so hopefully that helps.  Anything can happen!  I know this will pass eventual and I will be back to living life and loving my lungs, but right now in this moment this whole transplant thing kinda sucks. :(  praying tomorrow is a better day!
Nighty night blogollowers!

Saturday, June 7, 2014

A Picture's worth a thousand words

I don't have much news at the moment.  I'm doing well living my life.  Mexico was fantastic and I will post more about it later for today though I have a selection of pics from my Europe trip!  I finally uploaded them to my computer, Enjoy!

super cool looking duck, it had a candy corn beak!!!!

My stepdad, me, my sister, my brother at the D-day memorial in Normandy

American Cemetery at Normandy

Thanks to all the soldiers that fought!  This also reminded me of my donor since he/she is also known only to God (well and any family/friends but you get what I mean)

River ride in Bruges

cool drain I saw on the river ride (and managed to get a pic, prograf hands and all!!!)

Flowers in Keukenhof Garden in Holland

more flowers

super cute baby duck I saw and it got soooooo close to me!!!!!

My sister, me and my brother livin in a shoe!

and more pretty flowers (seriously I took over 100 pictures of just the flowers)

I got my big girl shoes on!

pretty self explanatory I hope!

another cute baby duck (we saw soooooo many of them in Keukenhof, I was dyeing a little bit inside from all the cuteness!)

Hope you enjoy the photos! Later Gators!