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!

Wednesday, August 7, 2013


I'm slightly drugged at the moment so bare with me if things get a little cray cray :p !  Haha ok so I'm not really that drugged but, you know me (just a tad dramatic!). Anyway it is the end of day three, over halfway done!  The rest of yesterday wasn't too bad. I did get my first ever arterial blood gas draw though which was a little rough.  It hurt, it wasn't THAT bad but my body decided that it was and decided to bail.  Luckily this wasn't the first time that had happend to me after being poked, allowing me to know sugar would bring me back to the world.  I got it just in the nick of time and returned from the quiet white world I was passing through on my way to nothingness.  (Yes, I'm talking about nearly passing out!). Anyway besides that little fluke the rest of, the rest, of yesterday went pretty smooth! 

Today I had my heart catheterization which was not bad.  It's funny cuz I was the most nervous about it yet it, so far, was the easiest of the bad sounding tests.  It was also done fast, for hospital time!  I was able to go back to the house and take a nap (did I mention I was drugged?) and see a movie at the theater!  We saw White House Down.  It was pretty good and I liked having a break from hospitalness for a bit!  

As for the previously mentioned drugging, no I have not suddenly become a heroin addict.  (what!  You never thought that was what I was talking about, darn :p)  I was given versed and something else for the heart cath.  Versed is supposed to calm you and make you not remember but this stuff never works for me.  It simply makes me feel funny and later I get really tired.  Luckily as I mentioned the procedure went well so it wasn't a problem that I was fully conscious, unlike for my wisdom teeth removal.  That is a story for another day, plus it's getting late here and I have some more lovely tests tomorrow, vq scan and a 24 hr ph probe (eek!) so I better get to bed.  Nighty night all you readers out there ( do they have a name for blog readers/followers, like how if you blog you are a blogger...Readogger?... Blogollower?Hum I kinda like that!)
 don't let the bed bugs bite, you blogollowers!

My drug delivery method!

Monday, August 5, 2013

Testing 1,2,3

As I write this I am currently sitting in a hall tucked away somewhere in the Duke Clinic building waiting.  The hall is kind of crazy feeling and I guess it's fitting since its the waiting area for psychology.  There are no windows just doors, lots and lots of doors.  There are a few chairs along the wall and that is where I find myself.

It is the start of day 2.  This time I'm in the waiting room for radiology in the hospital.  I am currently waiting to do my barium swallow test thing.  I'm pretty thirsty which is good I guess since I "get" to down some delicious chalky radioactive goo!  I can't wait!!!!  

In other news yesterday went well.  One problem we ran into was the lack of information the docs here have.  I mostly had meetings scheduled yesterday but hadn't had any testing done, well except having pretty much all my blood taken out. (for real I got 27 tubes of blood taken :0).  The lack of test results lead to doc appointments that went like this " hi I'm doc blah blah, here's  some info, give us a bit of your history, we can't really tell you much because we don't have anything to go off of.  Bye".  It is good to be here though and see what the place is like and meet people here.  We have met a few other pre-transplant people which is nice.  We also met one lady who has already had a transplant!  It was really good meeting her because she has already been through this once and was very successful she is 16 years out!  She is also here being evaluated which is a bummer for her but it is nice to know that 16 good years is a possibility and to now know someone who that is a reality for rather than just hearing rumors.

My barium test is over and mom and I are sitting in a cafe grabbing some food, trying to erase the barium's taste memory before my next appointment.  I don't want to jump ahead and call the barium test the worst test ever but it was pretty bad.  The stuff tastes HORRIBLE!!!! I kept gagging and even puking as I did it.  My poor digestive system is just not up to par when it comes to ingesting nasty things ( and even good things actually). I did not quit though and just pushed through!  I pray that the results are what they need and that I never have to do this again!  

Well that's all for now be sure to check back  later for more updates.  If you are the praying sort prayers that the rest of the tests are smooth and that I am the perfect candidate, basically that there is nothing that makes them hesitant to transplant me and that it is the right time, not too early as we have been hearing that a bit. ( though again with no test results they are simply going off of a quick exam and what I tell them, and we have already covered my slight denial problem!)

Until next time

The view from the airplane 

The lung boards hopefully one say sooner name will be up there! (Oh the fun of auto-correct!  It should read: the lung boards, hopefully one day soon my name will be up there!)

Thursday, August 1, 2013

The Waiting Life

I have entered a rather weird phase in life, waiting.  Yes, everyone waits for something at some point and we as humans spend quite a bit of time waiting for things to happen: birthdays, christmas, summer vacation, visits with friends or family, meeting "the one", telephone calls, traffic, lines at amusement parks and really lines anywhere, for a movie to come out, for a movie to start, for payday, for food to cook, for paint to dry and grass to grow, for lungs. (okay maybe not the last one!)  Anyway the point is that waiting is not a new experience.  It is something I have been doing my entire life here and there and yet this time waiting around is proving to be quite challenging and a huge life adjustment.  

I am finding that  I am having a hard time fully accepting that this, right here, right now, today, tomorrow and yesterday is still a part of my life.  Although I have had my fair share of waiting I have always, at least, had a general idea of how long I would be waiting.  This time is so very very different.  I have no idea, no time line, no nothing.  I know I am going to Duke next week but that is just the beginning.  I still don't even know if I will be accepted as a good candidate and then when this whole shin dig is going down, or how long it will take me to recover, when I can come home, when I can go back to school, when my life can start again.  Yet when thoughts like that cross my mind I have to remind myself that although this is extremely different from my previous life, even 2 months ago, this is still my life.  Yes I have no time line but I am still here I can still do things it is different but it is a life none the less.  And that is a lesson I am slowly learning. (Good thing I have a long time to learn it huh? :D )  

It is so very different for me to be able to make no solid plans.  I say solid because I have ideas of future goals and plans but I  either don't know when they will be able to happen, returning to school, and if I will actually be able to do them, climbing a mountain.  All I can really do is take things one day at a time, which is what we all are supposed to do anyway.  It is just odd knowing that I really can't count on tomorrow (okay actually tomorrow does have a solid plan but after next week I am back to the hazy uncertainty that is lung transplant waiting)  And no I do not mean in the sense that I might be dead, which I guess is a possibility but that is a normal possibility for all of us, I mean in the sense that I have no idea when and even if I will be moving to North Carolina.  After that I won't know when I will get lungs, and how long it will be until I can do somethings, and then get back to my "normal" or rather new "normal" life. For someone who doesn't like the unknown and tends to plan everything this is very hard for me.  But I will get there, ironically it will probably be right as I am getting my lungs, or finally being able to return home.  

I am sure though that no matter when I finally get it(how to wait and live) will be the perfect time for me to get it and this will be a lesson that comes in handy later in my life.  God puts us where he wants when he wants us and his timing is perfect. All I need to do is continue living and learning how to have a waiting life!