Wednesday, February 19, 2014


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.

Tuesday, February 18, 2014

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.

Monday, February 3, 2014

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. 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????

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!

Saturday, February 1, 2014

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, (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!