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!      

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.

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!)

no news is good news!

Hello,
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! ;)

A few steps forward, a slight step back

Whew! What a week it has been.  They have kept me busy every day for what feels like all day.  I don't think I have been this busy since high school!  I do like it though.  It definitely helps the waiting go by faster and helps me miss home and school less when I am distracted all day.  Most of my days here consist of pulmonary rehab, a short break in the evening and sleeping.  (Yes you read that right no eating, I cheat and do that in my sleep :p). I am really enjoying pulmonary rehab and have found that the time goes by rather quickly!  When I was first presented with the idea of working out for 4 hours straight a day I was a a little freaked out (that's a long workout for anybody let alone someone with 20% of normal lung capacity) I had also heard that people think the rehab is really tough.  Luckily they give us plenty of breaks and aren't all that hard on us.  Yes they make us work but for someone who has gone years trying to keep up with my normal lunged peers a workout class tailored for a weakling with crappy lungs is a piece of cake.  

Everyday we do an hour long floor class and then walking, biking and weight lifting stations.  It reminds me a lot of my aerobics class from high school, only we do the same thing everyday.  For the floor class we all "lay" on mats on the floor.  I put that in quotes because most people have a large wedge shaped thing under their mat so they look more like they are sitting back at an angle than flat.  We use a mix of leg wrap weights, stretch bands and hand weights as we lift different appendages.  It is very similar to a Pilates floor class though WAY easier.  After the class we are split into groups to begin stations.  They ease you into working out so Friday (my 3rd day of rehab) was my first day of getting to bike and walk for the full 20 minutes (each one for 20 mins).  It is quite a scene sitting at the bikes looking out over the gym at all the people huffing and puffing their way along the track or at the weight stations, pushing their walkers along, with several tanks of oxygen and what is practically a gas mask strapped on their face in order to keep their sats up.  I am sure that anyone who walks in the gym without knowing what is going on would be quite puzzled, it is definitely the craziest gym crowd I have ever seen!  After all your stations are complete it is off to the classroom for that days lecture.  The topic changes each day and is meant to prepare you for different aspects of post transplant life.  So far I have attended anatomy and physiology parts 1 and 2.  (a breeze compared to college A&P!)

The best part about rehab is getting to meet all the people.  There are about 15 people in my "class" though this changes a lot.  New people join, older students graduate (occurs after you attend the mandatory 23 sessions) and it seems someone is always absent for clinic visits.  You are only aloud to miss class for a clinic visit and they are way stricter than school.  I had one (clinic visit) on Wednesday and when I got back I had like 5 different staff members asking me where I was the day before!  At least you known they are on top of things!  Other than the attendance aspect it is nothing like PE class.  I had been told it was like a family over there ( meaning the center for living, the place rehab is held) and they weren't kidding.  Everyone is so friendly and we all joke around with each other and have a good time!  It will be hard going to a regular old gym after this is all over.  I have met a lot of people so far and they all seem so great.  It's a neat opportunity as well because there is a huge range of ages.  A few of the people seem like they are pretty close to my age, (I am assuming they have CF too, though I have yet to talk to them) but other than that most of  the people seem a good 30 plus years older than me.  Since I am quite new to this whole adult world, it is interesting to see adults interacting with each other in the normal human way, rather than the way adults tend to act around kids.  I am sure this experience is doing wonders for improving my social anxiety!

As previously mentioned I also had a clinic appointment this week.  I had some labs drawn (a measly 6 tubes this time!), an x-ray and another dreaded arterial blood gas draw.  Luckily this time the lady was able to get it in one stick and I brought some candy with me so I didn't come close to passing out.  Other than the pain of having an artery stabbed this test was easy peasy!  I met with another one of the pulmonologists.  I liked her as well.  So far all the people I have met at duke seem very nice!  She thought that I would probably be ready to list in a few weeks which would be great!  It might even mean getting lungs on September 13th is possible!  (this is the date I picked that I am really hoping to get my lungs, I've already put in my request with the big man and all :P !)  She said that they need me to be able to complete the rehab requirements and that it would be good for me to attend some classes before I get listed.  All of this sounded good to me until she took a look at my blood work.

dun... dun... duuunnn

After checking out my blood work the doc noticed that my immunity to vericcella (or the chicken pox) is borderline.  Unfortunately the vaccine for this is a live virus, which would mean no rehab for a month since people who have had a transplant can not have or be around a person who has had a live vaccine.  The doc is uncertain if getting the vaccine now is the best plan so she decided not to give it to me then and will talk about it with the rest of the team on Tuesday at their weekly meeting.  I have mixed feelings about this because I don't want the chicken pox down the road, if it can be avoided, but I also don't want to wait around an extra month while the virus gets out of my system.  To me the waiting around seems the worst though because it would mean no rehab which is what keeps me busy all day and is my social outlet.  I am praying that the docs decide I do not need the shot and that God allows my immunity to protect me from the virus in the future.  I would greatly appreciate similar requests from my praying blogollowers! (and it wouldn't hurt to ask for my transplant to be on the 13th too!)  

That about sums it up for whats happening here in the trees.  (I feel like I am in the middle of a forest...strike that I am in the middle of a forest!)  I'll write again when I know more, or in a few days, though with the schedule they got me on it is hard to find time to write.

Tootal loo Kangaroo!

P.S. I just wrote that whole post sitting upright without using the chair back for support!  If I keep this up I could be a body builder in no time :P ! 

P.S.S I don't want to be a body builder but I do need to work on the being able to support myself while walking as this is the hardest thing for me in my workouts.  I get out of breath much faster when I am walking and they keep having to turn my oxygen up.  Pretty soon I too will be one of the "gas mask" wearers!

road TRIPIN!!!

Leaving Colorful Colorado

We're here!  After nearly 5 full days of traveling we have arrived in North Carolina.  We left Tuesday afternoon and headed out to Wichita, KS where we stayed for our first night.  As we settled into our hotel for the night we discovered that due to a slight mental malfunction there was no Walgreens clinic in Dallas (our next stop)  I needed to have a TB test which we started at home monday evening.  The plan was to have it checked once we got to Dallas.  Unfortunately the lack of Walgreens clinics in Dallas meant getting it checked in Dallas was not actually possible (I had the test started at a Walgreens clinic since you can have it checked at another one).  Lucky for us Wichita did have a clinic.  This threw a slight curve ball into our plans, meaning we had to spend the day in Wichita waiting for the correct time.  

Windmills in Kansas

We filled the day with a trip to the movies and a search for food.  We saw We're The Millers which was hilarious.  The movie has also now inspired me to want to rent an RV and travel around the country.  Ok actually that is only partially true, I have wanted to do that for awhile the movie just reminded me of that!  In addition to the movie we got a lovely tour of Wichita thanks to the unending wisdom of Siri as we searched for a place to grab a quick bite before getting my arm evaluated.  Luckily, no thanks to Siri, we managed to locate a cafe.   The cafe offered my mother a chance for some food and me a lovely italian soda (made with the good syrup!)  While we were inside I met a lady who has a daughter with CF.  I was taken off guard as the women approached me.  We were in a cafe that was an outreach of a local church so naturally as a stranger approached me I assumed it was some sort of spiritual attack and prepared myself for the worst.  As the lady began by saying I don't see a lot of young people with oxygen, my thoughts were turning towards confirmation of my hunch, assuming to get some sort of lecture how my situation is probably because, according to her, I don't know God enough or that I simply need her to pray for me or at the very least I was expecting to be questioned as to my spiritual beliefs.  As the lady continued I realized that was not at all why she approached me.  It turned out that the women had a daughter with CF and seeing me on oxygen made her think I might just have it too (a good guess).  It was nice to meet someone who is familiar with the disease. 

Oklahoma

After our lovely cafe encounter we headed over to Walgreens to await the highly anticipated TB results.  I was very anxious as I awaited the doctors opinion on my highly questionable forearm.  NAH,  it was pretty obvious I didn't have TB!  Once all the paper work was taken care of and I was officially cleared we hoped back in the car and headed south to Dallas.  

On our drive we passed through Oklahoma, which is a state I have never been too.  I thought it was really pretty.  We also got to pass thought a little of the area that was hit by the tornado, though we did not see much.  I did see a spot where a store was gone with a sign saying returning soon, I assume it was destroyed by the tornado.  Also the top part of a movie theater sign was being worked on and mom saw a house that was missing its roof.  

Bob, Mom
Susan, Me, Sarah

As the sun went down we entered into Texas and finally reached Dallas.  In Dallas we stayed with my cousin Sarah who recently moved out there.  It was pretty fun getting to see her and where she lives.  We stayed in her apartment with her and she took us around.  My Aunt and Uncle also happened to be passing by Dallas on their way home after taking my cousin to school.  They stopped by and the 5 of us went out to lunch together.  We picked a cute old fashioned soda fountain a few blocks from Sarah's apartment, which was fun to get to see.  They had all kinds of drinks and some crazy sounding sandwiches.  Unfortunately I wasn't hungry so I did not try anything.  I will just have to go back someday!

Linda, Me, Mom

After spending Thursday in Dallas we headed on down the road to Alabama.  Our next stop was Linda and Jeff's house.  Linda is my Stepdad's sister.  It was nice to get to see them and hang out for a while!  Linda took us around and showed us downtown Huntsville.  It looked nice and had a ton of very cute houses.  After a stop at a nice little Deli we headed back to the house where we spent the afternoon.  Linda and Jeff inherited a hamster, which no one in the house liked, but I thought was the cutest, and I spent my afternoon with him!  He was the craziest hamster I had ever seen, in that he would go out for "walks" as Jeff called it.  Basically the hamster would be released into the back yard and would just wonder around for a while.  The crazy part was that he didn't run away, or even try to run away and could simply be caught by walking over to him and picking him up.  I had a fun time playing with him.  Later he found some shade under a tree and took a nap!  We hung out in that spot for at least an hour!  I am going to miss that little guy! (I tried to get mom to let me keep him as Linda and Jeff did not want him but she wouldn't :(, not even for 50 bucks which Jeff offered to give her to take him off their hands)  

My little Buddy

As the sun came up on Sunday we began to prepare to leave for the final leg of our journey.  (I may have exaggerated that just a tad...we might have left a tad closer to 10 :P )  We drove through Tennessee, a small part of Georgia and into North Carolina.  We also passed through the smokey mountains which reminded me of  home a bit, though I would call them baby mountains!  After a few more hours our trip was finally done.

Baby Mountains

Today was spent shopping as we needed to get a few things that we didn't bring (soap, shampoo, toothpaste, etc.) and hanging out.  Tomorrow will be the start of business! I am looking forward to getting things moving and hopefully finding out kinda what the plan is.  I am also looking forward to starting rehab and meeting some people out here though I have heard that rehab is tough!  Lets hope I can make it through!  

Later Gators!