Travel on

Bonjour! 

See I've picked up a little French! ...okay maybe not.  It has been over a week since we left home and we have exactly a week left of our trip.  So far we have been to Paris, Normandy beach, Bruges, Haarlem and tonight we are in Calais.  We also made an afternoon trip to Amsterdam.  So far my favorite place would be Bruges.  I like the smallness of the town.  All the streets are tiny!  I also like all the canals and old buildings.  It felt like I was back in time!  It also helped that pretty much everyone spoke English. 

My other favorite place we have been is Normandy Beach.  This is where D-Day took place.  We went to an area where there were still remains of bunkers and tunnels.  The land there was covered in craters from land mines and bombs.  It was really neat to see the remnants of the battle fought there.  I enjoyed getting to explore the bunkers and climb along the craters, a reminder to me how different my life is with these awesome used lungs!  (Pre-tx I wouldn't have had the energy or air to explore).

We also went to Keukenhof gardens.  This is a huge bulb garden in the Netherlands.  It was so beautiful.  The colors were so vibrant! There seemed to be an endless mix of flower combinations each just as spectacular as the next.  I took soooooooo many pictures, but you really have to see it in person to get the true beauty of it.  It's an early night for us tonight as we leave early tomorrow to catch the ferry over to London!

Nighty night

A real French Macaron! (not as tasty as mine but looks correct)

Enjoying pommes frites in Bruges

One of a million awesome buildings in Bruges

Baby ducks in the canal!

Rest are from Keukenhof Gardens

Six mois! (Sees muah)

Happy 6 Months! Saturday was officially 6 months from my transplant, and I spent most of it walking around Paris! What a way to celebrate!  It has been wonderful being here actually able to breathe.  Today I walked over 6 miles and never got out of breath!  (My legs are not quite a fan of all the walking, especially all the stairs, I think I needed a little more weight lifting before my trip!).

 

There are many challenges on this trip for me.  It is completely different from challenges with CF.  With my cf lungs I needed to find a fridge, come up with a way to keep my medications cold while on the plane and of course lets not forget the fun of dragging my vest machine around the airport!  Now I have pills to take at certain times, which was actually quite challenging trying to figure out when I should take them with the time change.  (Add in my sleep deprived brain and it almost got me to tears I was so overwhelmed, I did figure it out and didn't miss any doses though!). I also have my immune suppression which makes finding food I can eat a challenge and riding on the moving petri dish (what some may refer to as the subway) is slightly terrifing.  Luckily I have my mask and plenty of hand sanitizer!  

So far I have seen most of the sights, Eiffele Tower, Louvre, Arc de Trionphe, etc, all from the safety of a double decker tour bus.  One day we will be actually seeing the sights from the ground, hopefully they are much less crowded then they were as all I see when I see crowds is a bunch of walking germs and I'd kinda not like to be mixed into that.  Well I'm off to bed, adios! (Being in a place where another language is all around has triggered my Spanish brain!)

On the plane

Notre Dame

Stumpy the Bird!

In front of my sister's school

And of course the Eiffel Tower!

they need your lungs! (and other stuff)

Happy National Organ Donation Month!

I hope you have all signed up to become an organ donor.  If not you can do so here (you will need your drivers license number and basic information)  If you are not currently an organ donor I ask that you seriously consider becoming one.  Being a donor will not change your life any, but once you are gone it can dramatically change another's life.  There are soooooooooooo many people who are waiting for organs and their shot at life, we are in serious need of donors.  Please go sign up right now!  (I'll wait!)

GO



seriously


Thank you!
It is amazing to me how much a good organ can change a persons life.  I am living it everyday!  I have finished my rejection treatment and am almost back to my maintenance dose of steroids.  The treatment went well and the side effects were not too terrible.  My ferocious hunger is back, it took a few days off while the 'roids made my sugars skyrocket.  Since the last time I wrote I have also officially become an adult.  (well in the doctor world at least, I still think of myself as a kid and I have been an "adult" for 4.5 years!)  After 3 failed attempts I have actually transitioned to the adult cystic fibrosis center.  It will be good to be seen at an adult hospital rather than continuing to "sneak" into the kids place, though as odd as it is, I'm going to miss it.  It took going to Duke and then my last hospital stay from hell to really make me appreciate children's.  It is a little weird going to a CF doc where no one knows me since I have had the same doc since I was about 4, again though Duke broke me in since no one knew me there either.  It is a little nice though, to get a fresh start.  Thats about it that is happening in the medical world for me!

In other life, I am preparing to go on a trip to Europe!  I am really excited that I am getting to go (unless something crazy happens here in the next week)  My sister has been studying abroad in France this semester.   My family planned to go visit her during this semester, but with my whole transplant happing it was up in the air whether or not I would get to join them.  Luckily I am doing well and have been given the okay to go!  I have not been to Europe since 6th grade and I loved it there so it will be fun to go back.  Plus I am really looking forward to being able to keep up with the group and feel good!  As odd as it sounds I am even looking forward to all the walking!  I really could use the exercise and I have discovered that walking is actually quite easy!  I will try to update you all while I am gone, and if not definitely when I get back!  I hopefully will have a ton of pictures to show as well!  (I am unfortunately the worst at taking pictures and tend to carry my camera around without actually using it! I'll try to work on this while I am gone!)
Au revior!      

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.