we're pals right......right?

Hey!
I have returned from my latest trek out east.  Although this trip was much better than the last one (see here and here) it did bring with it less than ideal results.  I have mild rejection again.  Luckily since it is mild and my last bronch was good they are treating me with iv solumedrol, in other words 500 mg of iv steroids!  Oh what fun!!!! Hopefully this does the trick and rights my inner world.  I have grown quite fond of these puppies but unfortunately my inner cells, mainly those somewhat pesky immune ones, don't quite agree.  Oh well what can you do.  I continue to live my life enjoying each day and remembering that things are totally out of my control and quite unpredictable.

Anyway, in other news I have developed a bit of boredom.  I guess that is to be expected since I am not really doing much at the moment, but it also kinda sucks to feel so...blah, a lot of the time.  I am lucky though, since most of my time back in CO has been spent being sick or super sleepy or nauseous, I have only recently developed this boredom and in a few, very short, weeks I will be going on a marathon of trips.  When I finally settle back at home again it will be summer, my sister will be home and I can possibly get a job giving my something to do!  Until then I am stuck in this weird limbo, between transplant and getting back to real life (aka school!)
Thats all for now folks!
See ya later!

The New Me!

Hello there!
First off, and obviously most important :P, I am now writing, er typing, on a computer again!!!!!  My computer broke back in November and it took me this long to finally commit to buying a new one, then another 5 days until I decided to open it.  Yes I may have some issues with change, its no wonder I had some troubles with my lungs right at first!

Today marks the 5 month anniversary of my transplant!  Not that there is really anything special about 5 months but it is crazy to me to think that it has been 5 months already!  On one hand it seems so short and on the other it seems really long.

I realize I kind of left you hanging there with my hospital stay...sorry!  Things got worse with mr. crazy doc after my last post and we ended up putting in a request to be transferred to Childrens Hospital (where I normally go).  The transfer was very smooth and within 18 hrs of arriving at Childrens I was moved out of the ICU and back onto the regular floor with a plan in place to work on getting me home.  I also was able to get the IgG treatment I was needing.  It had been discovered at my last clinic appointment that my IgG (one of the antibodies in your blood that help with your immune system) level was way too low.  To solve this they give an infusion of IgG antibodies.  Unfortunately my insurance was giving us trouble so up until this point I had yet to receive my infusion, leaving me extra prone to infection (is it a coincidence that I ended up with pneumonia?)
As far as the blood sugar issues are concerned, the insulin drip was stopped pretty much immediately upon arrival at childrens.  The hourly sugar checks were stopped as well and I finally got a good nights sleep in the ICU no less (yes I was very tired)  I met with my usual endocrine team at childrens and we decided to keep my insulin regimen mostly the same although we switched my fast acting kind to an even faster acting one.  I have been home for about 2 weeks now and my sugars seem a lot better (also helped by the fact that I'm not sick anymore!) though now I am having lows quite often.  Like I mentioned before my sugars are very much a work in progress.

After a few days at childrens I was released and sent home to finish up my iv meds.  That was a bit rough as I had meds due every 4 hours, but we made it through.  I am now med free (well other than all the millions of pills I take, but that will be my life from now on) and feeling back to normal, actually better than normal!  I am no longer nauseous!  In fact the prednisone munchies have finally set in for me and I am hungry all the time!  It is a bit bazar as I will eat so much that I am uncomfortably full and yet I am still hungry.  I feel very much like the very hungry caterpillar and my food choices tend to resemble his! (think cookies, ice cream, candy, pizza!)  I also have more energy than I have in a long time!  I even went running a few times, and get this .......I liked it! (WHAT????)  Granted I didn't run very far, less than an 8th of a mile each time, but I can do it and after building my muscle mass back up I am betting I will be able to go farther!  (remember I am still recovering from my 20lb weight loss, I have gained 11lbs already!)

The biggest change I have noticed is mental.  I have finally come to terms with what has happened to me and that I actually can get better if I get sick and am able to function like a normal human.  I have realized that I actually can make plans for the future and there is a good chance that I will be there for it!  I guess after 22 years of knowing you will probably die young it is a wonder that it only took 5 months for me to switch my mind set to one of living.  Granted I could get rejection any day, or die of  a million other more normal causes but this time around I feel good until those happen and getting sick doesn't bring a new, lower level of, normal but instead a temporary discomfort followed by increased health!  I am also much happier (probably a lot due to the nice weather!) and very much looking forward to the future knowing that soon I will actually be able to do the things I want to do and simple tasks, like walking my dog, are actually simple!

welp, thats all for today folks!  So go out and um...run!?!
Tootles!

Sweet!

I'm in the hospital once again.  Had a fever, got worse told to go to the ER to have tests, stupidly went to local hospital ER and not hospital with my cf team's ER, got admitted, given antibiotics, responded to them, feeling better, ready to go home, fully capable of continuing IVs at home if need be, Nausea mostly gone as of mid last week!

 The speed version and now you are up to date, wasn't that nice! 

So of course I have a long story to tell.

You are correct you know me too well!

My blood sugar issues are proving to be quite a problem.  My doctor here seems to think my blood sugar is extremely unmanaged and needs to be controlled before I am let out.  Unfortunately this guy has only just met me 3 days ago and I have a, shall I say complicated medical history.  We have explained that my sugars are crazy, don't make much sense, that we are working on them with my docs and that (controlling my sugars) should not be the main focus of this hospital stay.  Do I agree that my blood sugars are not being managed perfectly? YES of course!  I am not of fan of running in the high 300s at least once a day but things are moving in the right direction.  We have finally gotten my lows to be nearly eliminated which are far worse feeling and much riskier than my highs and my highs, for the most part have been lower than they have been.  We don't have the right plan yet but we are making progress and with anything new it takes time to adjust to it and get it right.  Plus if my possessive (in a caring way) transplant team, who I saw a mear 2 weeks ago and who were able to save my life by giving me new lungs and then save it again when said lungs didn't work right away, are okay enough to let me go over 1000 miles away from them, then I'm going to trust them in this situation, instead of the doc who ordered my meds at the complete wrong times (putting meds that interact badly together and trying to have me take my enzymes when I'm not eating anything) and asked me this morning if CF effects my absorption (uh yeah!).  I certainly don't  agree that my sugars warrent a 3 day and counting gig in the ICU.  Unfortunately between my mother, my father and myself, we are not getting through and this is one girl who knows when to put up the white flag. So I have earned another ride on the blood sugar coaster at the CF transplant world fun park!  At least on the plus side when this is all said and done I will have perfected my multi-all nighter with periodic power nap skills, as hourly blood sugar checks are a great training tool in the hopefully up and coming sport, hey maybe I'll get gold!  (Yes the Olympics are on right now and yes I do watch both the prime time and the repeats most nights as that is just about the only decent thing to watch on the hospital tv at 2:30 in the morning!)

I'm not so sure good night is the appropriate way to end this thing,  but as it is the middle of what free (aka out there, no not hippie, the free, in the world, not stuck in the hospital) type people call night and I have a cat nap to be getting to I will leave it at that, good night.

The nauseous baker

                   My macaron test batch

My nausea continues and yet I have developed a slight obsession with food.  Pinterest, YouTube and food network are all serving to feed this addiction.  I only slightly want to eat the food, mostly I want to cook things.  (Very odd for me as I typically hate cooking!).  Yesterday (actually several yesterday's ago, as in last week :D ) I decided to tackle the French Macaron!

I watched a few videos and search a couple blogs and felt ready to take on the challenge.  As I prepared to make my macarons I was terrified!  My sister who is an amazing baker has tried to make them and had some trouble, who knew how mine (a very novice baker) would turn out.

In the end I got a few that looked almost right.  I read that the mixing is the most crucial part.  Naturally the little scientist in me decided to experiment rather than making one uniform batch.  I mixed up the "dough" different for amounts of time to see if I could hit the jackpot.  I think it is about 30 turns.  The only problem I had was that my macarons have more of a skirt than a foot on the bottom.  A quick internet search found it is likely due to an oven temp that is too low. 

About to Start

The Mixing...dun dun duuuunnnn!

I surprisingly enjoyed myself while making these and am actually looking forward to trying the recipie again!  Now to get this nausea under control so I can actually enjoy my creations!

P.s. I'm back from NC.  Everything went well and I had no rejection!  I have about 6 weeks until I go again.

The drugged kid and the messy car

As promised here is the story I mentioned the other day.  It's kinda gross so be warned if you have a weak stomach scroll on by.

Friday morning I woke up bright and early for my bronch.  I was already starting to feel better now that my prograf levels were coming down.  Everything went well with my bronch and, as planed, upon release from the hospital mom and I got in the car and headed for my grandparents house.  

I was still pretty sleepy and drugged (they sedate you for the bronch) but I was also really hungry.  We looked around for a Starbucks (what I was craving) but didn't find one. After an hour of sleeping I finally decided an IHOP would do.  We stopped and I quickly settled on a meal.  French toast with bacon and sausage, as well as a hashbrown and 3 pancakes.  Oh and of course a hot chocolate.  I ate nearly all of it (3/4 a sausage and a pancake short) and felt good.  I was so happy I could finally eat again I took a pic!  

Almost instantly after the pic the puke feeling came.  I ran to the bathroom but success was on my side.  My breakfast stayed in, I recovered and we were on our way.  I napped for the next hour until my mom woke me up about 5 minutes from my grandparents house for directions. I successfully guided her.  

We were on the last road before their house when it came.  My stomach suddenly became violent and out of no where I felt a lump in my throat.  "I almost threw up" I said to my mom as if it were no big deal.  A few moments later it came again.  This time there was no stopping it.  I quickly jumped into action.  Puke...outside....open door

My brain came up with a plan and before I knew it my hand was pulling the door open so I could relieve myself on the side of the road mess free.......right????

Wrong!!!!

Those are some crazy drugs they give you and even as rational and sane as you might feel you probably aren't as we can see here.  No thoughts of a bag or some container ever crossed my mind.  Nope, I was going to puke on the side of the road, because clearly that was the best plan.

Luckily in this situation the door was locked and my brain could not comprehend the obstacle or this may have ended up being a far worse situation.  I struggled with the door for what felt like ages as puke began spilling from my facial orifices, until sundenly there was an opening to the outside! ( also known as a window, which luckily my mother seeing my struggle had the sense to put down). 

In the end I managed to cover myself and both the interior and exterior of our car in that delicious breakfast I had been so proud of scarfing (actually I are quite slowly) down. 

What a hello that must have been for my grandparents!

Prograf and Creamsicles

Hello again blogollowers,

I have returned to the ol' NC.  Wait... before you freak out, everything is fine it is just time for my 3 month check up.  (Can you believe it's been 3 months already, and actually nearly 4, wowzers!). My appoiments and bronch are all over so now we just wait to see if there is any rejection.  If there is I will need to be admitted and treated with the lovely (or so I've heard) RATG.

I was really looking forward to this appointment (that is not sarcastic at all)....(no really it's not!). I have been feeling extremely nauseous for about the past 3 weeks.  I had been communicating with my coordinator through it and the best we could figure was that it was some type of stomach bug and I just needed to wait it out.  Well after 3 weeks of puking, eating only creamsicles and orange juice and 20 pounds less...me, (the results of said 3 weeks) I was really getting tired of it and beginning to wonder if something was really wrong.  Once we met with my doctor and had a slew of tests done we discovered the likely culprit was my prograf.  This is one of my main anti rejection drugs and can cause nausea especially if the dose is too high, which it was, sitting at a bit over 32 when my target level is around 12! My prograf level had been high once before (only for a day). I happened to be at clinic that whole day and got so nauseous by the end I couldn't walk.  Mom had to push me in a wheel chair around, only that made me sick too and she ended up having to go at a snails pace just so I could make it without loosing my cookies (not that I had any left in me by that point).  In both cases a few missed doses and then a smaller daily dose seemed to do the trick.

Anyway through this all I have learned that meds suck and make you feel sick and creamsicles taste really good even when you are nauseous (plus they don't taste too bad on the way back up! ;p )

Oh and cars, nausea, pancakes and one super drugged kid (well technically adult) add up to one VERY messy situation but that is a story for another day.... Maybe tomorrow...well today but I'll save it till the suns out! 

Nighty night!

The listed list

Not much has been happening in medical transplant world lately, or in regular world for that matter (hence my lack of posts, well that and pure procrastination!) I have realized I never posted a hospital packing list.  I looked for this myself pre-TX but never really found one and thought I should make one for my fellow TXers, so here goes

Once listed pre&post TX hospital bag

Blanket (it's nice to have a soft one the hospital ones are often kinda scratchy)

Note: although for a normal hospital stay I would suggest bringing your own bedding (pillows, sheets, etc.) in the case of a transplant I wouldn't recommend it.  The bed gets pretty nasty from all the blood and goe that it's better to stick to a blanket and maybe an extra pillow that you can easily move out of the way and use the hospitals bedding for the rest.

Soft washable pillow

Pull ups or depends (I would recommend for anyone, it's hard getting to the toilet and this provides some protection if you don't quite make it!)

Pics for the walls (it helps liven up the room plus if you go crazy like me, pics can remind you of the world out there you are trying to get back to)

Eye mask and ear plugs (if you can sleep with that sort of thing.  I personally hate them and would rather deal with the light and noise)

Good shoes for walking

Slippers or easy to get on shoes

Sox

Hairbrush

Hair ties

Chapstick

Toothbrush

Toothpaste

Safety pins (great for keeping that gown closed during walks)

Clothes to go home in

A few things to do

(Don't go crazy in this department, most of the time I was either not up to doing anything or my brain was just too confused to really do something)

     Some ideas are:

          Coloring book

          Book

          Music

          Bible (if you are spiritual)

          Simple craft

          Small simple puzzle

          Card/board game

And most importantly a new fan

I got soooooooo hot after my transplant I used up all the ice packs in the ICU before my parents went out and got me a fan.  I loved that little fan so much!  My family laughs about it now because any time anyone got in the way of my fan I would motion to them to move ( about the only firm motion I could do!)

I think I got the basics covered.  If I come up with more I'll make an amended list. The thing to keep in mind if you have been in the hospital a lot before is that a transplant hospital stay is like nothing else you have probably experienced.  It is very very different from a typical CF "tune up". I usually feel decent most of my tune up time and have energy, the motor skills and the mental capacity to do a veriety of activities.  During my transplant stay I hardly had the motor skills to surf Facebook and no where near the mental capacity to comprehend what I was doing!  Stick to simple and comfort when packing for the hospital.  Your days will probably consist of sleeping, procedures and of course walking, walking and then some more walking.

A few other hospital tips:

In case you aren't already aware don't bring food, you most likely won't be able to eat it and it will just sit there tormenting you.  If you are lucky enough to eat while in the hospital you can send someone out to get you food once you know you can consume it.

Ask a nurse if the hospital you are at has a medical cosmetologist.  They will come and wash, cut or style your hair.  I had this done twice and loved it both times.  It is so hard washing your hair in the hospital even without having had surgery, yet having clean hair does wonders in helping you feel better!

Me after my second shampooing!