Sunday, September 29, 2013

Waiting, Sleeping, Tubes and Stuff

With only a smidge of new med info I figured its about time for a more "normal" life update.  Mom and I have been living in the forest (aka Durham/Cary) for over a month now. Crazy!  On one hand it doesn't feel that long and on the other hand it feels like it's been an eternity.  The other day I was watching a YouTube video that was filmed possibly somewhere near home or a place like it and I realized just how much I miss big open spaces where you can sit under the shade of a tree but still be able to see for miles!

I'm not kidding when I say we are living in the forest this
pic is the view off the back porch. No they don't
 live isolated in the mountains but right in the middle of suburbia! 
Aside from missing the view and of course all my friends, family and doggies, things aren't too bad her in NC.  Fall has apparently started to arive and with it some very pleasant weather!  Not too humid or hot!  I haven't really spent much time outside though but it has made the walk from the house or rehab to the car much more pleasant and tolerable.  

Mom and I have been trying to find things to do to keep us busy on the weekends, which has been a bit of a challenge as I have hardly any energy left by that time but we have been doing a few things.  A few weeks ago we met a lady at church who invited us over.  It was so great to spend time with her and her family.  She has two young daughters who are both so sweet and fun!  They spent the evening thoroughly entertaining us!  We also met up with a cousin of ours whom we had never met but who happens to live just minutes from the hospital.  She is so friendly and we seem to all get along well.  It is a bit strange to think we only just met a week or so ago, it seems like I have known her a long time.  We had dinner with her one night and then also spent an afternoon wandering around Durham at at craft fair.  I enjoyed both outings despite getting poured on most of the time at the craft fair.  We have also spent a fair amount of time with my grandparents.  That has been a nice change as I usually only see them once or twice a year.  This year I am already up to four times and it has only been a little over a month.  In fact it will be five times later today as we are meeting up with them for a bit this afternoon.  They just got a new puppy and I am dying to see it!

Other than our few outings I spend most of my time either at rehab or sleeping.  I feel a bit like a baby with the hours I spend asleep.  Its good that I have all this time to sleep since I am soooo tired most of the time, but it does get a bit frustrating because I usually like to go places, but instead I am so tired I stay home. 

Rehab is still going well.  It has gotten increasingly harder to get myself to go.  My mom and I sometimes sing the rehab song as we are pulling up with me saying the "no no no" part, as that is how I often feel.  Despite my avoidance desire, rehab is still decent.  I have been making friends there and it is nice to see them and talk with them each day.  I am getting stronger which is good with me.  Unfortunately the tasks never get easier as more strength simply means more weight but it is nice to know I am moving up and it is actually doing something.  At the end of the day I feel pretty good, exhausted, but glad I did it.  This past friday I officially graduated from rehab, which is basically another way of saying come at a different time.

I am still waiting for The Call and have not had a single dry run since I got listed.  It is a bit odd to me as I was thinking that this would happen fast and that I would have had at least one dry run by now.  Each person on the list is given a score based on how sick they are and how well they would do with a transplant.  I have a fairly high score and a common blood type as well as no antibodies.  These factors make is more likely for a call to come quickly which is what my coordinator also thought.  I took this as within a few hours or certainly a few days, but it has been almost a week and no call.  I am beginning to realize that quick may have another meaning here.  In the grand scheme of things if I am to get a call sometime in the next month that would be quick (at least for transplants).  We came to Duke because of the short wait.  When you are in it each passing hour feels like an eternity but if I compare it with the pretty much guaranteed over a year wait I would be facing at home, even 6 months becomes quick.  

Waiting is a very bizarre situation.  The closest thing we can relate it to is waiting for a baby to be born.  You know that it will happen, yet at the same time it seems a bit unreal.  Add to that the uncertainty of time and the invisible leash that keeps you close to the hospital.  With a baby though, you know that by the tenth month it will have happened, one way or another the whole thing will be done and the baby will have arrived.  Unfortunately with us that is not the case.  The call could come right now or it could come a year from now, we have no idea and all we can do is wait.  The challenging part is trying to let go of the anticipation of the call and attempt to return to life.  Each day that goes by is just that, a day.  The sun rises, birds sing, creepy bugs craw (yuck there are so many of those here!) and we try to do things.  The best is when we can forget that we are waiting for that life changing call to happen and simply go about our "normal" lives.  It is incredibly challenging, I can't imagine what it is like waiting months or even years and yet there are people who are doing it every day.  

In medical news, the allergy test went fairly well.  They gave me a does of iv Benadryl before starting the antibiotic which mostly took care of my reaction.  I felt extremely drugged from the Benadryl which was not entirely pleasant but I guess it is better than being covered in hives and itching.  Towards the end of the infusion I did begin to react a bit.  I turn red, my face swelled up, my gums and tongue felt funny and my head itched.  A second does of Benadryl took care of this almost instantly, though again with the drugged feeling.  I am not sure if the docs will end up using this med or not, but the doc in the infusion center felt it would be okay to use with a double does of Benadryl.

Tomorrow (if I make it with out getting the call....nah I'll make it) I have an appointment to see about changing out my G-tube.  After transplant the docs here use GJ-tubes.  These tubes are similar the the g-tube but they have an additional part that goes into the small intestines.  They prefer this for after transplant as reflux into the lungs can lead to rejection and feeding into the intestines greatly reduces the chance of reflux (maybe eliminates it I am not positive on this one).  A feeding tube is not always used after transplant but since I already have one the docs will use it.  The unfortunate part about the GJ tube is that it is LONG.  My tube right now is a small little "button" it lies mostly flat against my stomach and is hardly noticeable through my clothes.  The GJ tube is a long maybe 12 inch tube that dangles out of your stomach, not exactly the kind of thing I am dying to have after trading in my oxygen tube for new lungs.  Not being one to sit around and let things happening I did a little digging around and found that some G-tube companies do indeed make a small "button" form of the GJ-tube.  I asked about it (stumping my coordinator :D ) and ultimately found that it could be a possibility.  They will have to do some tests and look at my stomach to see if the small tube will work for me but if all goes well I should be able to get it.  

If you are the praying type please pray that this small tube will work and that the tests for it and getting in put in are fairly pleasant procedures.  I would also love prayers for my transplant, that it happens soon, goes really well, I have no major complications (especially that the nerves to my vocal cords don't get cut :0 ) and that the lungs work well for me for a long long time!

Well thats all for now!
See you soon Baboon!

P.S. when The Call comes (really once we are in the hospital waiting around) I am planning to send out a quick blog letting you all know what is happening.  During surgery and the beginning of my recovery I will have my parents update this so you all know what is going on! So be sure to check back.

P.S.S just an interesting tidbit.  The name for my blog came from my years spent in the hospital sitting, literally, in the window.  My mom would call me the girl in the window.  As my transplant journey meant new hospitals with different windows I naturally thought of the name On to New Windows!      

Monday, September 23, 2013

The Wait

I have been listed now the real wait begins!

Blah week

Good morning
After over a week of silence the suspense is off, I am finally typing a new post!  Last week was a rough week mentally.  At my doctors appointment the week before my doc had mentioned that I was probably ready to be listed and the docs would discus my case at the weekly Tuesday meeting.  I was excited at the time even though it would mean no lungs on the 13th, we finally were getting some news.  Tuesday couldn't come fast enough.  Unfortunately Tuesday came and went and in this case no news was not good news.  The next day I finally heard from my transplant coordinator I was approved for listing all that was needed was a surgery plan and a med plan.  I was so excited, finally things were happening I could be listed even by the end of the day. I was glued to my phone that day. Unfortunately I never got the call I was hoping for.  Instead I learned that I would need to go in for an antibiotic test dose.  That was a bummer but I still felt it could happen soon. On Thursday I learned that my appointment was scheduled for Monday 4 entire days away, 96 hours of what I felt was wasted time.  And for what? So I could go and get the one thing I know I am allergic to shot up into my veins. Yup sounded like a great plan.  

Luckily time has a way of moving even as slow as it feels some days it keeps going bringing us down the road.  So here I am sitting in the infusion center with a IV in my arm awaiting my itch serum.  Hopefully I have good news soon.  Stay tuned for more.

Wednesday, September 11, 2013

While waiting...

Well this should be a quickie cuz it's late and I'm sickish and tired.  I thought I should write a quick update.  This week started off well but by Monday night I was starting to feel a bit bad.  I have been feeling this off and on at night for the past few weeks and this is normal for me.    Sometimes though the sickish feeling gets worse or isn't gone in the morning and this was the case.  We called the docs and they had me come in for an appointment.  It was a bit weird meeting with them because they didn't seem to know why I came in and acted like it was a regular old visit.  At the end we asked what they thought we should do about my sick feeling and they felt I would be the best judge in this case and we decided to wait it out another day and see if I got better.  After a very unrestful night I felt a little worse and decided antibiotics would probably be a good call.  I told the docs and they got me hooked up with some oral drugs and tomorrow will hook me up with some drugs I can shoot up! ( see even in my sick state I can still be a little funny :p). The bonus of yesterday's surprise doc visit is that I finally got to sign the papers for getting listed.  The doc said they will possibly list me next week!  (It means lungs on the 13th probably won't happen but it's still before my birthday so it's all good!  Plus who knows what kinda plan the big guys got. In my experience he tends to do some crazy things so I think the 13th isn't entirely out as unlikely as it is.)

So now I just wait.  Wait to get better, wait for lungs, wait to join my people again.  I'm not sure if it has to do with the getting sick thing or not but the past few days I've been pretty "home" sick. I put that in quotes cuz I'm really just missing my peeps whether they are at home or school.  I am so excited for the day I get to go back to my life and join everyone again!  I also really miss my family especially Grace and Paul.  It's pretty weird being the only "kid" in the house and it makes things pretty quiet and a bit dull at times.  I guess I'm getting a little taste of what Paul's life is like now that Grace and I are gone. :(

Well nighty night y'all :) 
(See nice and short!)

Saturday, September 7, 2013

no news is good news!

Week two of being in the NC is done!  I have now successfully finished 6 classes of rehab!  There isn't much to report this week.  I met with another surgeon on Tuesday.  He walked us through the surgery a little bit and covered the risks.  Unfortunately due to my messed up insides it will be a much harder and riskier surgery than your standard lung transplant.  In the docs words it will be a challenge but not something he thinks they can't do.  I like to think of myself as one of those rare cases on Gray's Anatomy that the interns (and surgeons) are fighting over.  The surgeon also gave us a copy of my x-ray!  I have seen both this and my ct scan before but this is the first time I have gotten a copy to keep so now I can share it with the rest of the world! (yes that means you!)

  Right                         Left
The white blob on the right side is my heart.  If you look closely there is  a dark tube shaped thing above my heart this is my trachea.  If you want to see a normal x-ray you can look it up on google.  Essentially the white heart blob is in the middle and the lungs (large darkish shape on the left) are equal on both sides.  Pretty cool huh?  My right lung collapsed so my body adapted, shifting the heart over and expanding my left lung!

Okay enough suspense I know you are just dying to find out what happened with the whole vaccine thing.  When I went for my appointment on Tuesday the docs had me get my blood drawn again to re-check the varricella antibody level.  After waiting the rest of the week we finally decided to call the docs and find out what had happened with that.  Hoping that the lack of a follow up call meant they felt I didn't need the shot.  Sure enough that was correct!  In this case God decided to say yes to our request and up my immunity!  Yippie!  I am still hoping for lungs on the 13th!  (we have run into another slight hang up.  My test results from some test I did at home never made it to Duke.  We are praying they make it soon, so they can get me on the list!)

Happy last Saturday with my old lungs! ;)