Sunday, December 8, 2013

Rollin on a River

Things are continuing to go well.  My energy has stayed and I have been feeling good.  I have started to adjust to all the meds and do not feel nauseous very often anymore!  It is looking like things are wrapping up here.  I Graduated from rehab on Friday and might be heading home early this week.  We will find out more tomorrow as I have my usual Monday appointments.  It's crazy because as we face the possibility of going home I am both excited and sad.  I am excited to see my family and friends at home, to be in my own home again and, of course, to see my puppies!!!  At the same time though it will be sad leaving the new friends we met out here.  I will also, as crazy as it sounds, miss rehab.  Rehab was such a unique experience I will miss getting to interact with people in the same place as me each day.  It will be a bit of an adjustment to go back to a world where being a transplant recipient is a unique thing.

As we begin to prepare to transition back to "regular" life I am forced to face the future questions.  I am not sure what I am going to do when I get home and what this next semester will look like, I know I want to return to school but I don't know when that will be.  I am mostly taking it one day at a time and just seeing what life brings.  If I have learned one thing from this whole experience it is definitely how to take things as they come, at least how to do it slightly better than before.  Gods got a plan and he knows where and when he will take me there.  
Don't get off this ride just yet!  It has only just begun!

Wednesday, November 27, 2013

Turkey for this Turkey!

Tomorrow is Thanksgiving and it is looking like I will be joining my fellow Americans (who are aloud to eat) in stuffing myself on turkey day! ( not that I actually like turkey, but who knows maybe now I do). Anyway, things have been going really well for me the past week.  I have had energy everyday and have not had a nap in 6 days!!!  I still occasionally have moments of nausea or other weird feelings but I am starting to feel good more often than not.  I have been working on eating and am slowly beginning to cram more stuff down in there at once.  Tonight I pretty much ate a full meal! (It may have taken a few hours but I got it down and didn't feel completely awful!) The real test will come tomorrow. :)

The break brought along some visitors, providing a nice change of pace.  My mom switched with my dad and step mom and got to go home for the week.  My friend Jenna got to visit this weekend and yesterday my sister came!  I have been having a really good time with my visitors and it has really helped me to feel more like myself.  I think I am ready to go home now and get back to regular life.  If things continue the way they are moving I may be able to get home in a few weeks!
I hope you all enjoy your turkey day!
Gobble gobble :D

P.s. it's flu shot time! Be sure to get one if you haven't yet.  Protect yourself and people around you like me (immuno compromised peeps!) 

Thursday, November 21, 2013

Moving forward

Hello again lovely people of the Internet.  Its been a bit since I last updated you all and a lot has happened.  We moved! I can eat some food!!! and some time has passed.  I am doing pretty well.  I feel tired almost all the time and sleep quite a bit.  I know I am getting better but some days it is hard to see. I also find it a bit difficult to grasp the concept that one day I will be better.  I will be able to run and dance, swim, laugh,, you get the point.  I know the day will come when I look back and this is all just a distant memory but in the moment it is hard to imagine and truly believe.  And yet, I can look back and remember my hospital days when I felt even the small progress I have made wouldn't happen, heck a week ago I couldn't even eat and felt the day I could eat would never come, but it did!

My first meal!
Yes you are correct I can officially eat food.  I am not back to normal eating but I am aloud what is called a chopped diet.  I call it soft foods.  It has opened up many doors for me and I definitely feel better knowing I can have some food go through my mouth.  I have my next swallow test on Tuesday and am hoping I get cleared for thin liquids so I can finally have something to drink, that isn't thick and gooey.

I finally got some pics from the hospital and of my staples for those of you who want to see that.  The picture bellow is from the hospital.  The tubes you see are some of my chest tubes.  I think I had 7 total, though as I count the holes now there may have been 8, either that or one of them split into what looks like 2 holes.   In the bottom right corner there is a red blob.  This was one of my chest tubes.  I had 2 tubes like this one.  They were smaller than the others and had a little ball thing attached to them and they drained right into that.  The rest of my chest tubes were connected to these big plastic containers that kind of reminded me of the thing people use to test pool water.  I am not really sure if there is such a thing, as I am no pool expert, but I feel like I have seen people checking the water with a rectangular shaped box that scoops up the water and then has different chambers that are different colors.  If you know what this is than great you now have an idea of what the chest tube drain boxes looked like and if not, or if such a thing doesn't exist, I just described it so you are set too!  The next picture is of my incision line.  I have staples in for now.  I tried to count them, quite a difficult task, and I think there are about 100 of those pesky little buggers in me.  They really aren't that bad, probably due to the fact that I am still partially numb around my incision, but they do pinch on occasion and I am looking forward to getting them out. (Which should be in the next few weeks here.  I am at week 5 post surgery already, can you believe it!?!)

Pretty cool huh?

Mom and I have begun to settle into our apartment and our new routine.  Its funny because I thought I would be giving stuff up and have a less complicated medical regimen after transplant, just a bunch of pills right?....WRONG.  I have WAY more to do now than ever before.  Luckily I think as I continue to get better and as time passes the regimen will get less and less.  Being able to swallow my pills will also add to the easiness, its a little hard to put liquid meds in a pill box!  Each week seems to bring lots of procedures.  Just when I think I have had every medical procedure known to man done to me, my doc surprises me with another procedure for me to do.  This past week brought my usual monday morning blood draw, x-ray, pfts (pulmonary function test) and blood gas.  Then I also had a bronchoscopy done and finally the easiest thoracentises I will ever have.

For those of you who do not know a bronchoscopy is a test where they put a smallish tube down your nose or mouth and into the lungs.  The tube has a light and a camera on it so the doctor can see the inside of the lungs.  They can then clear out mucous from the lungs, simply look around and take tissue samples.  The bronch is the only way they have so far to check for rejection.  I will automatically have one done 3,6,9 and 12 months after my surgery and then once a year for the rest of my life.  The bronch I had this week showed some mild rejection so I will have another one in a few weeks to check and see if the treatment for my rejection was successful.  They have a few different ways to treat rejection.  Since mine was only mild and it is my first time I got to be treated with a high does of iv steroids and then an oral steroid taper back to my normal does.  I had the iv at home which was super easy.  Other than making me a bit sick to my stomach and sending my blood sugars on a nice dollar coaster ride, it went fine. 

A thoracentises is a procedure where they take fluid out of the cavity between your ribs and your lungs.     The doctor looks with an ultrasound to find the fluid and then puts in a needle to suck it out.  My last x-ray showed some fluid so I had to get it removed.  The procedure was scheduled for friday.  I went in and was sitting on the table having the ultrasound done, when the doc declared there was not enough fluid for it to be worth taking out!  That was the best news of the week, no big needle in my back, at least not yet. 

Confession time!  I typed this on Saturday, maybe even friday (its been so long I can't remember!) It is now Thursday so naturally things have changed.  This week brought another doc apt on monday (lab draw, x-ray, pfts and abg (blood gas).  We also met with the nutritionist, diabetes doc and my pulmonologist.  Things are looking good.  I also got the okay to stop the bi-pap (yay!)  As long as things keep progressing well, my doc thinks the idea of getting home by Christmas could be a reality!

This week has been a marathon of doctor visits as well.  I was able to get another swallow test scheduled for tuesday, I passed and am just waiting for the doc to give me the official okay for eating normal food and.....DRINKING!!!!  I am so looking forward to a nice big glass of thin liquid!

Yesterday I had another 24 hr ph probe test.  I will have to wait find out how that went.  Hopefully it was good and I will not be needing the stomach wrap surgery.

Well its time for rehab so I got to go.
Later ya'll!

Saturday, November 2, 2013

I'm back!!!

After nearly 3 weeks of silence I am back to typing.  3 weeks, wow! Where do I even begin.  I guess I'll start at the beginning.  It was around 9 am or so when my phone rang for the second time with an unknown Durham number.  I answered and heard the now slightly familiar reply "Anna, we have lungs" followed by instructions on what to do.  This time Sebastian and Dave were with us so the four of us made the short drive from the hotel to the hospital ( we were in a hotel for the week while Sebastian and Dave were here)  The hospital was a whirlwind as they prepped me for possible surgery.  After only a few hours of waiting I got the second call, it was a go!  We sat around for a few minutes saying goodbye and then it was off to the operating room.  I had two lines put in, one in each hand glanced at the clock, it was 2:57 and that is the last thing I remember.  When I finally woke up I didn't really know what had happened.  It took a bit to process I was post transplant.  I was still on the ventilator and spent some of my first few remembered minutes trying to get off.  I knew I needed to breath so I just kept trying to do that.  Unfortunately due to the complications of my surgery I had to stay on the ventilator for several days (even while I was conscious).  I have no idea how I made it so long on the ventilator without freaking out.  I can only point to God and just know he carried me through.  He really has brought me through the whole process and still continues to each day.  

Before my transplant (it is so weird even today to type that, it still doesn't feel real) I had been told that it would be the hardest thing I have ever done, and probably ever would do.  Yes, yes it is.  So far the process has been the craziest rollar coaster ride ever.  Add to that all the drugs in my system and well.....yeah.  The hospital was definitely the hardest.  Although it is exciting being out of the hospital and at our NC home I still have a LONG way to go and each day is a struggle.  My pain has gotten pretty good and I hardly ever take anything for it so that is a definite plus.  

For me the two hardest things are not being able to eat or drink and being on bipap at night.  I am aloud to have 2 sips of a thickened liquid per hour, but when you have had nothing to drink for 3 weeks that hardly cuts it.  I really just want a nice big glass of water.  It is amazing how much we take being able to have a drink whenever we want for granted.  Each moment is a struggle.  I have times when I am okay, my mouth feels wet and I can forget a bit about not drinking, but then the ferocious beast of thirst shows its ugly head and it takes everything in me not to rush to the kitchen and chug all the drinks we have.  I now really feel for the people in countries without access to clean drinking water.

And then there is the bipap.  Due to my complications during surgery my lungs are still not completely good.  I have been having trouble getting the CO2 out of my blood especially at night.  Due to that the docs felt I would benefit from using a bipap machine at night.  This is  hard for me because it means wearing a mask that forces air into my lungs at night.  I hate being hooked up to things at night especially on my face.  I think the hardest part for me is that I did this transplant to have healthy lungs and ditch the o2 and yet I feel like I have almost taken a step back.  I had always been able to avoid the bipap pre-tx, I have a hard time believing that I have good lungs now that I need it.  Everyone tells me it may be temporary and my lungs need time to heal.  I know this somewhere inside but it is extremely hard psychologically to truly grasp.  

My days are pretty insane.  I have the craziest pill regimen ever, mostly due to the fact that I am not aloud to swallow my pills.  The kitchen looks like a chemistry lab most of the time and Beth and my mom are constantly busy crushing pills and mixing concoctions to give me.  When we aren't busy with pills we go out walking.  I still have an aversion to walking but I can do it and I don't even get out of breath (crazy right!)  When I was in the hospital I had to walk laps around the halls.  The first few times I did it the pt people with me would check my oxygen saturation and it was usually in the low 90s.  This always shocked me I haven't had an oxygen saturation on room air that high in maybe 7 or 8 years.  After a few days I began to be able to walk and talk, again that is not normal for me.  

I am pretty tired all the time and my chest feels very heavy.  I have all kinds of scars almost from head to toe (they cut off around my thighs)  I pretty much look like I went through a car crash, or shark attack as I like to claim!  My incision is huge and goes all the way across my chest, in a sweetheart neckline fashion.  It is really quite crazy to look at as it is filled with staples.  

I start rehab next week.  I also have my first post tx check up.  Ill update more later but I am pretty tired right now.  
peace out home dogs!

Wednesday, October 23, 2013

Day 11

Sorry for the long delay. Sometimes keeping up with all the different forms of communication can get overwhelming. I dropped the ball on Anna's blog. Anna got off ECMO on Wednesday night 10/16. By the end of the17th she had an epidural in place and finally the dreaded ventilator was removed. Anna walked a bit that night. What a huge leap she took in less than a week. Friday night brought her move to the step down unit. After being in the very posh ICU, the step down unit is rather depressing. It's old, the rooms are tiny and the waiting area is pathetic. 

Each day Anna has increased her walking. It's an ordeal getting all her chest tubes (she has had up to 7 of those but is down to 5 now) and IVs situated (I haven't kept track of the IVs. She had at least 12 at once in the ICU, she's down to 2). Anna uses a walker that has arm rests about chest-high. It gives her something to rest on and more stability. She is now up to walking just about 1 mile. I think by the end of today she'll be walking over a mile. Impressive considering her pain level is at an 8 (on a scale from 0-10). The sad news is that yesterday a possible new blood infection was detected. They don't know what it is exactly but her white blood count is elevated. The Drs were concerned it might be related to her epidural (which was providing pain relief) so they took it out. Not good news for Anna. She is in a ton of pain now. 

She hasn't slept much here due to the pain and she's really uncomfortable. She cannot eat or drink by mouth. She would give anything to get even just a sip of water. Her vocal chords and epiglottis are not doing their job of closing her airway and protecting her lungs from food and liquids. She has some exercises to do which may help strengthen things.        

Although Anna doesn't feel strong, I am amazed by her ability to tolerate all she has gone through. She's not up for blogging yet (and probably won't be until she gets out of the hospital---no energy) but when she is, get ready to hear all she has to say. She won't sugar-coat anything! :)

Wednesday, October 16, 2013

Better Day!

All signs are pointing in the right direction. Anna is still on ECMO and the ventilator but there is talk of getting her off ECMO today. Her blood pressure is stabilizing. She has grown a staph infection and another infection but both seem to be responding to antibiotics. She is alert and communicating with signs and writing. She's exhausted and in some pain but hanging in there. She wants the ventilator out (who wouldn't?) but is tolerating it well. I am so proud of her. She is a warrior!!!!

Sunday, October 13, 2013

New Day New Hope

Anna is still on ECMO. She is improving today little by little. She's got gobs of tubes coming out of her, so many she's reminding me a bit of a transformer...maybe she'll start flying :) She's still unconscious. That's best because she doesn't want to feel anything, especially that nasty intubation tube jammed down her throat. I think she told you all about her fears of that thing. Every now and then she comes to and begins to move slightly. I can tell she's saying, "Get that thing out of my throat!" They load her up on pain and sedative meds and she goes off to La La land again.

That's the update for today. I'll tell you more tomorrow.

Saturday, October 12, 2013

Anna Has New Lungs!!!

Anna's surgery is done!! She is having some complications at the moment. She is connected to something called ECMO. Like bypass but for the lungs. It happens sometimes when the new lungs are sluggish to function. We'll know more in 24-72 hours.

Anna's Getting New Lungs!!!

Hi! I'm Karen, Anna's mom. Anna gave me the pen to keep all her blogollowers posted :) She got the call this morning around 9:20 am EST. She didn't hear if she was the primary or secondary which she believed meant she was primary. She was right! I'll let her fill you in with all the details from her point of view. She went though the same pre-op prep as she did on Tuesday.  At 2:04 the transplant coordinator called her and told her "it's a go!" Within about 15 minutes they whisked here off to surgery.

So now we wait...

I'll keep you posted :)

Thursday, October 10, 2013

Tuesday, October 8, 2013

The Call

Hello again!
I got the call this morning.  I am secondary for these lungs so this is likely to be a dry run but I might get out of rehab :p.  It's funny because when I got the call all I thought was I want to go back to sleep!  Don't worry I didn't I got up got my stuff and we headed out to the hospital.  After arriving they sent me up to the short stay unit.  Now we wait some more.  Stay tuned!

Sunday, October 6, 2013

The foreigner and the pity diner

Why hello internet people.  Yes another week has gone by and still no lungs, in fact I haven't even had a dry run.  At this point I am really starting to wonder if I am actually on the list (no seriously I even sent them an email just to double check :D ) I honestly hope I'm not actually listed because that would explain why after 2 weeks I am still waiting. I know I know in the grand scheme of things even 2 weeks is quick, heck in the real transplant world (not the crazy fast duke world) 2 weeks is nothing.  I really feel for people who have to wait months or even years, it has been hard waiting the past 2 weeks.  The good news is Sebastian, our exchange student from last year, is visiting!  It is great getting to see him again plus he provides a nice change of pace!  Along with the arrival of Sebastian this weekend brought our second trip to the melting pot.  Our first trip was a splurge dinner my mom came up with since we were both kind of tired of being here and discouraged since I hadn't gotten lungs yet.  This past weekend we decided to go back because....well for the same reasons.  It was actually quite fun.  I'm guessing not many people return to the melting pot the following weekend as everyone (staff people) recognized us. (I guess being a 22 year old on oxygen might be a tad memorable as well). This time though we met the owner.  He was very friendly and and we chatted a bit.  After hearing our story he decided to comp our meal which was sooo nice!  We had been joking about making weekly trips to the melting pot our thing until I get my lungs, after that it might just be.  Unless I'm in the hospital you know where I'll be Saturday or Sunday night (both???)
Until then it's more rehab for this kid (how long am I aloud to call myself that?)
Cheese out! Dippin sticks!

P.S yes I am really on the list, the rational part of my brain always knew that but at least now I can shut that crazy idea down completely.

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! ;)

Saturday, August 31, 2013

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!

Monday, August 26, 2013

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. 

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! 

Monday, August 19, 2013

Lets hit the road, Jack! (Um... but lets come back!)

My last week is winding down. (sort of up, since I am now in the frantic packing mode, but you get what I mean!)  I am leaving in less then 24 hours, which is a little surreal to me.  I am ready for the future but also a little sad to be leaving my home and the people I know for so long.  Its kind of funny though because if I was going to school this semester I would be leaving pretty soon anyway, and yet this seems so different.  I guess because it is different.  This time I am leaving and a part of me will never return.  (yes, I'm talking about my lungs!)  Although it is sad it is also a bit exciting, I am about to head out to the unknown again.  I did this last winter and it was amazing!  I loved being on my own for the first time, and meeting new people.  This time I won't be on my own and I won't be living with a bunch of people my age like I was when I went off to school but I will be meeting a ton of new people and the best part about that is that most of them are similar to me, at least in their situation which is something I have never experienced.  

I want to say thank you to my family and friends who helped make this last week here fun!  I had a great time hanging out with all of you.  I especially enjoyed dancing and hanging out with the Kinneavy klan (like what I did there? :P ).  You guys are so fun, I am glad I get to be part of your family!  

Sorry this post is so short and kind of scattered.  I wanted to get a quick update in before I left and like I said, today is a little crazy with all the getting ready that needs to be done.  I have a few last minute doctor appointments today.  We learned on friday that I needed a few test before we leave but we were already planning to leave tomorrow.  Luckily it turned out we could get them all in so we are still leaving tomorrow it just adds a few more items to todays agenda. 

My mom and I are driving out to North Carolina.  We are taking a bit of a long cut to make a few stops along the way.  First stop is Dallas to see my cousin who just moved there.  Then its on to Alabama to see David's sister and her family.  After that we will head on over to North Carolina.  We are planning on getting there on Saturday.  I am guessing I won't be posting from the road. (sorry guys but it will make me too sick to type in the car)  I will update you hopefully next weekend.  In the mean time keep those questions coming!  The more the merrier!
Tootle loo Kangaroo!

Tuesday, August 13, 2013

Doctor Calling

Good morning blogollowers (yes I think I am liking that word!)

 I have only had an hour of my Tuesday and yet already the doctors have met, discussed me and called me back (again just goes to show the fastness of Duke).  As I was expecting they want to me to come out.  I am in my transplant window!  I am excited but it doesn't really feel any different since I have been expecting to hear this pretty much from the start.  It is nice to know that this is really happening and maybe my "goal" of getting lungs before my birthday might actually happen! I put that in quotes since I really have very little control over the matter, only how soon I get there and my effort in pulmonary rehab other than that it is up to God.  If you are the praying sort a prayer for lungs before my birthday and a quick time on the ventilator would be greatly appreciated.  I have been working on convincing myself that I will breath right after surgery and only be on the ventilator for the minimum time.  This "training" of my brain may work, after all I learned in my social anxiety therapy that your brain believes everything you tell it.  So if I tell it that the ventilator will suck and I'm going to be stuck on it for a long time, I most likely will but if I tell it that it won't be too bad but we are going to breath on our own right away then my brain should help make that happen.

Well you are in luck today cuz thats all I have for now!  (a nice break after my marathon post yesterday!)  I think this would be a great time for questions so if you have any post them bellow and I will do a blog in the near further of questions and answers! (btw I think I have fixed the problem so you should all be able to post comments!)

tootle loo!

Monday, August 12, 2013

Hell Week!

Hell week is done!  If you have ever seen surviving the cut, or gone through it for that matter, you know what I am talking about.  Hell week is the endearing term given to many of the military advanced training (paratroopers, army rangers etc.) first week of training.  It is an intense physically, mentally and emotionally demanding week.  The soldiers are put through the ringer, practically starved and forced to face their limits.  Although this past week was, I am sure, not even in the same ball park as a true hell week it was pretty tough.  I like to think of it as the hell week of transplant, to weed out the weak and leave only the ones who have what it truly takes to get their chest ripped (almost literally!) open.  And guess who made it through???? Yeah thats right this one!!! :P

Over all the week was not too terrible.  I did have nearly every medical test known to man done, and about half my blood taken but I made it, starved and all!  We are supposed to find out tomorrow what the decision from the transplant team is.  After speaking to the last doctor (the head pulmonologist of the program, and the Chief Medical Oficer, whatever that means, though I am sure it is important)  it seems like it is my time.  He was telling us he thought I should get this done within the next 6 months and that I need to start preparing myself that transplant is my best option. (little does he know I am already there!)  He said as soon as I'm ready he is ready, and at least mentally I am ready!

Since I typed my posts this past week on my phone I am deciding to include a walk through of my week to give more info about the process.  If you aren't really wanting to know the ins and outs of transplant eval than skip on down.

Okay I am a summing the rest of you are sticking through with me to the end!  Seriously now is the time to start scrolling!!!

Well now that we have that taken care of, get something to drink, pop that popcorn and pull up a chair this is going to be a long one!

Day 1 started out bright and early (7:45 east coast time to be exact) with a group meeting introducing us to the world of lung transplant.  We learned all about the process and the Duke program.  We also got to meet several other people who were also in the evaluation process.  I really enjoyed this part as I am not used to meeting other people going through the same thing as me.  In the CF world we are told to stay away from our fellow CFers.  A necessary rule due to increased infection risks but not ideal emotionally.  The second day I even met a man who had pretty much the same schedule as me which was so nice!  It was a tremendous comfort to know at any given moment there was someone else a few rooms down going through the exact same torture, if he could do it so could I!  One thing that was very interesting to me about meeting my fellow transplant candidates was how healthy I seemed compared to them.  Granted I am probably at least 30 years younger than even the youngest of them  but I still felt like I was not even in the same game as many of them.  For one thing I was pretty much the only one who was walking, though I learned later this will be an advantage for me due to the physical requirements of transplant, and I was hardly coughing or anything, if it wasn't for the oxygen strapped to my face you would have no idea anything was wrong.  This unfortunately strengthened my idea that I might not be sick enough, an idea I kept trying to convince myself was not the case and that I simply am better at not succumbing to my sickness probably due to the fact that I have been "sick" my whole life.  Anyway day one was a plethora of meetings I saw an infectious disease doctor, psychologist and the transplant surgeon after the first meeting was finished.  My meeting with the infectious disease doc and surgeon seemed pretty useless, except that I now know them and they know me, because neither one had any of my past records and no tests had been done yet.  The surgeon didn't even examine me and yet somehow he echoed my thoughts of it probably being too early.  Again I simply wrote this off as his lack of information and my mental status as "sickness denial"  working to convince everyone around me, at least on initial impression, of my being totally healthy!  Overall day one was a breeze and completely pleasant other than the, sleepiness.  Oh yes, and the 27 vials of blood that were taken out of my body, yes you read that right it was indeed 27!  And then came day 2.

Day 2 started off early with a mini panic attack as I anticipated the day to come.  Luckily getting up and walking around a little was able to calm me back down enough to sleep well the rest of my short night. When the day actually began Mom and I took our lovely rented red fiesta to the Duke medical pavilion for the dreaded barium test.  After being relocated to the main hospital, my name was called and it was time to let the torture begin.  A barium test is a test where you are required to drink barium while having x-ray and fluoroscopy pictures taken of your esophagus and stomach.  The test looks to see how well everything is working and what problems there are.  It sounds harmless enough, unless you know what drinking barium is like. The barium they have you drink is about the consistency of paint, add to that a box of ground up chalk and you are getting close.  This wonderful white chalky concoction is then given a sickeningly sweet artificial flavor that can only be describe as gross.  Add to this the fact that it is 8 in the morning and I haven't eaten in 6 hrs and I am usually pretty nauseous in the morning, especially if I haven't gotten enough sleep and you have yourself the perfect mix for an unpleasant situation.  Lets just say the barium is as nasty going in as it is coming back out.  The good news is I stuck with it and did not give up even after the technician offered to end the test and tell the docs we just couldn't get it.  After my fair share of barium liquid torture the ordeal was finally over and I was released for a short break.  My mom was hungry so we headed over to the cafe where I had a small bit of a granola, apple and yogurt plate.  I mostly ate the granola as it had no resemblance to barium.  The apples had a sweetness that was reminiscent of the barium and well, lets just not talk about the thick white yogurt that was sitting on the plate.  In the blog post I wrote after this test I called it possibly the worst test of them all, well the results are in and I am pleased to say my initial impression was indeed correct, the barium swallow gets the badge for worst test of hell week!  The rest of the day was not horrible, though not entirely pleasant.  I had a consult with a doc about my heart cath for the following day, pfts (pulmonary function tests, which are what they sound like, tests to see the function of my lungs), a few CT scans and my lovely first ever arterial blood gas!  The blood gas test was definitely a rough one, but wasn't too bad.  If you have never had an arterial blood draw consider yourself lucky it is about 10 times worse than a venous blood draw, I think due to the fact that your arteries are deeper and thicker than veins.  This test is typically drawn from your wrist, and it was for me, at first.  Unfortunatley after digging (and yes I do mean digging) around my wrist with a needle for a while my artery spasmed and stopped giving blood.  After the needle was out and my world was beginning to fade (nearly passed out after this test) I learned I would have to be stuck again as more blood was needed.  A few quick sips on a sugary drink in an attempt to stop myself from slipping away, another artery poke (this time in my elbow bend) and I was good to go!  The rest of the day was a breeze, complete with terrible numbers on my pfts ( a desired result for a hopeful lung transplant candidate!)  The day was done early enough for some free time before bed and the  heart catherization (dun dun dun) the following day.

Day 3, the heart cath.  I was fairly nervous about this test.  In fact it was the only test I knew about early on and had pretty much been dreading it since I first decided to get a transplant.  We started the day extremely early needing to be at the hospital by 7 AM (a good 30 minute drive away)  After arriving at the hospital we were taken to a small patient holding room where I was given an iv and left to wait to be taken away to the cath lab.  A heart cath is a test where a catheter, or small tube like thing, is inserted into a vein in your upper leg and sent to your heart.  This test measures a more accurate blood pressure as well as pressure in your lungs.  It can be used to test for pulmonary hypertension.  I had been walked through the test by many different people and had learned it would be similar to a picc line , which is a breeze for me to get placed ( a picc is a small tube that is placed in my upper arm that goes to my heart and is used to give iv medication to me when I am in the hospital.  I have gotten over 14 of these in my life time and easily have them placed without any sedation, only local numbing!)  By the time they were wheeling me away I was very calm and no longer nervous about this test.  Overall this test was a  breeze, even with the failure of the versed, a medication given to you to sedate you and make you not remember.  This has not worked for me since I was very young, and if it does anything, which requires a HUGE dose in my case, it has a very very delayed effect.  I was only given a small dose for my heart cath resulting in my complete coherence during the test with only a slight dizzy feeling.  Not a problem for me as I have mentioned I am used to getting piccs totally conscious.  I was rather tired and slightly drugged the rest of the day though.  I even took a nap when I got home and was quite out of it, asking my mom "if this was real" when she woke me up to go to the movies.  After the heart cath I had an echo done, which is a heart ultrasound, this was also when my versed decided to start working causing me to become overwhelmingly tired.  I managed to stay awake for the test though, as I like watching my heart show up on the screen.  Both tests were done by early afternoon, allowing us to have quite a bit of free time, which was used for a nap and movie.  As I have mentioned we saw White House Down which I enjoyed.  It was pretty exciting and fast paced, which was good given my mental state, I did indeed stay conscious throughout the movie!  I was oddly calm during the film, feelings not echoed by my mother, which now that I think about it may have had more to do with my drugged system than the movies lack of suspense, meaning the movie is quite likely a suspenseful one!

That brings us to day 4
On tap for this day was a lovely VQ scan and the wonderful, coveted 24 hr ph probe!  ( I know, I know just try to contain your jealousy :P )  The VQ scan, also known as a ventilation/perfusion scan was up first.  This is a scan to look at the gas flow and blood flow to the lungs.  First you breath in a radioactive gas, in my case Xenon, then you have a radioactive tracer injected into your blood.  The first part, the gas was a bit rough.  I had a mask strapped on over my mouth and nose and was told to breath in the gas.  Now I don't know about you but the idea of breathing in radioactive gas is a little world war II esque and doesn't really sound like something I want to do willingly.  Add that to the fact that the mask was rather tight and made me feel slightly like I couldn't breath and you have the recipe for a lovely panic attack!  I however did not have a panic attack ( yay!) but I was close and it took a lot of will power to keep myself calm through the agonizing 5 minutes of total stillness while they took the picture they needed.  I think if I could have just adjusted the mask a bit it may have been better, but that was a big no no, as it would disrupt the pics and to me the sooner they were done the better.  After the gas part of the test was over the mask was removed and I could breath normally again!  The rest of the test was...well... dare I say pleasant?  I was lying on a table very similar to the type used for a CT or MRI and simply had to lay there while the camera thing was moved all around me to take pictures from various angles.  It took a while, so I simply closed my eyes and enjoyed the rest I was given after my early mornings I had been having all week.  A meeting with the financial counselor was next and after that the lovely esophageal manometry and 24 hr ph probe!  The financial counselor meeting was simple enough.  She reviewed our insurance with us and walked us through the cost of transplant, talk about expensive, I could buy a SUPER nice house if I could just take the money its going to cost instead!  We also discussed fundraising or as I like to call it Fun- D ($) raising.  I am kinda of excited to do it (is that weird?) and am happy that the financial counselor suggested it.  I had been talking to my mom about doing it before and she didn't seem to keen on the idea but now that it is coming from a transplant money pro she seems to have changed her tune.  I am sure there will be more on this later but for now we are just starting the process of setting the whole thing up.  We are in need of volunteers to coordinate events in your area so let us know if you are interested!  The company we are working with will train you and provide you with support.  Moving on, the last part of the day was the dreaded esophageal manometry and ph probe.  These tests were very similar in procedure.  Both required having a tube inserted through my nose and down into my esophagus.  The first one, the esophageal manometry was by far the worst, though neither was very pleasant.  The esophageal manometry (now referred to as the em since I am bored typing esophageal manometry over and over again!) test looks at the muscles in your esophagus to make sure they are functioning correctly.  The tube that was inserted for this test was HUGE!!!!  It was like the size of my pinky, so as you can imagine it was not fun having that shoved down my throat.  The only saving grace for this test was the fact that I got to drink an ocean load :) of water!  I was sooooooooooooo thirsty after being starved for the past 4 days that finally getting to guzzle a tone of water almost made up for the pain of having something that shouldn't be there forced down my nose.  After the test was complete, which was like 20 minutes, the probe was removed and my nose was free for a minute or two while the next probe was prepared.  The second test (the ph probe) was much less painful, this fun guy was about the size of a small piece of spaghetti.  The part that kept it up to par with its big mean older bro the EM was the fact that the probe was placed and then left there for 24 hrs, yes as in the rest of the day, all night and the next day.  I don't know if you have ever swallowed pills that then got stuck in your throat but this was the feeling I was left with for the next 24 hrs.  I did enjoy getting to see the ph levels in my esophagus from time to time, as I was hooked up to a monitor I had to carry around that read out the numbers from the probe.  A car ride home and lots of sleep brought us to the end of hell week, also known as day 5!!! (hang in there you are doing great we are almost done!)

Day 5.  This lovely ending to the fabulous week long North Carolinin Vacation, brought a few meetings with docs and such as well as a liver ultrasound and the removal of the ph probe!!!!  The day was not too bad, even with the fact that I still had the lovely probe down my throat.  A quick side note if I opened my mouth and looked at the back of my throat I could actually see the tube, kinda weird but also kinda cool.  Anyway, the morning started out with a meeting at the center for living.  This is where pulmonary rehab is held.  All Duke lung transplant patients have to go to pulmonary rehab before and after transplant.  This is to get you in the best possible shape before surgery which will help with recovery and to help get you back to good shape afterwards which again helps with recovery and success of the transplant.  I got to see the place, which looks very much like a gym, and do another 6 min walk test.  My first one was done on day 2 after my pfts.  I have already passed the distance requirement of the 6 min walk for passing pulmonary rehab!  (you know me always the overachiever! :P )  After my mini work out session it was back to the clinic to meet with the transplant pulmonologist.  The person I meet with is apparently a very high up doc in the hospital so that was kind of cool.  He was the first, and only person, that seemed to think I am in what is called the transplant window, being sick enough to need a transplant but healthy enough that it is very survivable.  That was mostly good news, except that right before he came in I had finally made piece with the idea that I might be returning to school this fall instead of getting new lungs.  It isn't official yet, we should get that call tomorrow, but he is pretty high up so I am guessing that will be the case.  That brings us to the last test, my lovely liver ultrasound (and I say that with hardly any sarcasm at all! No really I'm serious!)  The test took only a few minutes, was totally non invasive and as soon as it was over I was greeted with a lovely refreshing bottle of water, which I promptly guzzled down.  I had been so thirsty this final day, after my water free "work out"  the tube being in my nose (this was removed after the doc visit, before the ultrasound) and the starvation that comes with hell week! 

A nice bonus to this week was getting to see my grandparents.  They live a few hours away from Durahm and drove up on Friday to hang out.  We went out to diner on Friday and then breakfast on Saturday.  For dinner we went to a hibachi place.  It was fun and the food was good though I still prefer Benihana.  Breakfast was super good!  I had cinnamon roll French toast which was like a sweet bomb went off on my plate and then was topped with frosting and whipped cream.  It was a bit of a sweetness overload but it was delicious!  After breakfast it was back to the house to pack and head to the airport!  

Whew that was a lot.  Congratulations on making it!  Oh and welcome back to the hell week description skippers!  I think I need to post more frequently cuz this was just way too much at once!  For now I am back home, waiting for the call from the team informing us of their decision.  This should be sometime tomorrow (Tuesday)!

Mom and I at the airport

Part of the Duke clinic building.  I believe this was the old hospital entrance.

I'm not drugged in this pic I swear!  Due note the tube in my nose, this was the lovely ph probe.

After dinner with my Grandparents

My delicious cinnamon roll french toast!

Tata for now!