it's beginning to look a lot like…2019 😬

I wrote this blog on January 10, 2023, sorry for the late post.  Maybe I will actually keep up with this thing.  SO MUCH HAS HAPPENED since 2019 😬 and I realized I basically haven't shared anything.

January, a time of fresh starts and new beginnings.  Unfortunately over here, it’s looking more like a rewind.  
After successfully avoiding covid for the past 3 years I was finally caught by the little devil.  And well it pretty much took my life shook it up, melted it, cut it into pieces baked it and then handed it back.  To say the last few weeks have been rough is a bit of an understatement.  

My life today looks a hell of a lot closer to my life 4 years ago instead of 4 weeks ago.  
Im laying in my bed wide awake because  listening to the song of the sick.  The rhythmic breathing of the oxygen concentrator, the hum of my feeding pump and the occasional beep if I lay in the wrong position.  

My clothes no longer fit, I can't keep up with others, I spend my days napping and watching movies, dreaming of the day I can get up off the couch and vacuum my own house.  Once again I think of my living room while I sit on a couch that is not mine and live out of a suitcase because I can't be on my own for now.  and I realize, Ive been here before.  4 years ago.  But as I struggle to take a deep breath and realize it might be just a tiny bit easier than it was yesterday.  And as I set the oxygen aside I realize I haven't been here before.  Before there was no getting better.  Before the weight wasn't coming back.  Before the apartment was getting cleaned out.  Before I was dying this time, this time Im going to live. 

I do realize that the fact that I’m typing this right now means I didn’t actually die and did live that time too but this time is soooo different.  

This time I can choose to work hard, jump back into life and get better.  Or I can just give up and wait.  Last time I had no choice.  My body was actively attacking my lungs and no amount of laps or healthy meals or willpower or even medication was going to change that.  The only way forward was to give up.  To let go of those lungs and do it again.  But this time, this time I can actually make a difference.  

And you know what? I’m finally so ready that my changes aren’t going to stop there.  It may have looked like I jump full speed ahead into life but the truth is I don’t.  Most of the time I let life happen.  I let fear and doubt get in my way.  But, NOT. ANY. MORE!  

I'm the damn leading lady NOT the best friend and it’s time I really become her.  (Pst…. You are too! )

So this year, 2023 let’s make it the year we get off the couch, we take those first few hard steps, we do the hard things, we call the friend or plan the trip, we keep walking and pretty soon we realize, it’s not 2019.  We didn’t go backward.  We took everything we have been through shook it up,  melted it down, cut it up, and baked it into something truly wonderful!  And this time, for the first time, we really are truly, truly LIVING!  

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Partial Blog from March 30, 2022

A Little Bit Crazy

Okay first off I owe all of you an apology.  Life gets busy, people get sick, a little depressed, and blogs get forgotten.  A lot has happened in the last 3 years (can you believe it has been that long, I sure can't) and not just in the world but in my own life as well.  I will fill you in overtime but the quick version is, I moved back home while waiting to be sick enough for my second transplant.  I ended up getting it in October of 2019 and moved back home right in time for the world to shut down.   I spent the next few months taking it easy and working on healing.  So far I am doing well, these lungs are holding up and aside from being more tired and worn out than before I am doing well.  And that is the quick version so let's dive into our story for today.

What it's real?  Have you ever asked yourself this?  Do you ever wonder, have you ever not been able to tell?  I have.  3 times now.  The most recent being 5 days ago.  

It is a pretty scary experience.  This time was the worst as in my "dream" world I went from being in the car to what I thought was a pretend hospital room.  When I came to and was still in the "pretend" hospital room saying I was confused is an understatement.  The details aren't really important but this experience more so than the others showed me how bad our mental health care is in this country.   I needed psychological help and it was not given to me.  Instead, I was put in a room alone without anything familiar to hopefully come back.  When I did my questions went unanswered and I could not figure out why I felt "awake" from my dream yet was still sitting in the room it took place, rather than in the car where I was supposed to be. 

Winds Are a Changing

Quick note: I wrote this post over a week ago on the plane to Oregon for Thanksgiving :O guilty!  Anyway its a bit of old news but......you are in luck as I will post an update this week!  TWO POSTS IN ONE WEEK!!!!! WHAT?!?!?!?!

Hello Bloggolowers!  

If you haven’t realized by now that my posts may will be sporadic, its time to check yourself as this has been going on for 5 years.  Wait….. WHAT!?!?!?!?!   5 YEARS… wow!  JK I know it has been 5 years did you?  Anyway this is my 6th year with these new used puppies!  Things have been going well…okay.  This latest year brought with it some.. doctors… hurdles… problems excitement.  It all started around this time last year. I had returned from my adventures in London and was a bit sick. A doctor visit and a course of antibiotics later and I was back to my usual spunky self.  Fast forward a few weeks to Christmas.  I had begun to notice that things were not quite right and my breathing was not as good as normal.  I kind of wrote it off as I was in Aspen at the time and going from living in Phoenix at a few hundred feet to Aspen at a few thousand feeling out of breath sooner was kind of a given. However, Christmas morning I jokingly told my mom “I probably have chronic rejection”, you know in the way I used to say I was going to probably get cancer one day…. Uh… I should probably stop saying these things!  I wrote it off and we went about our vacation.  Then I went to the doctor.  This was a routine follow up I had scheduled weeks before and figured it would be good to do as I was leaving for a cruise in a few days.  Long story short this doctor appointment set off a whole chain of events that is still going on to this day.  If you aren’t caught up with what happened check it out here and here.  So now that you are up to date, lets talk about what has happened since.  The Campath worked wonders.  My immune system was wiped out (I had one lab test that actually had the result of 0!), and the plummet down the lung slide stopped.  I was stable for a while and other than some mild tiredness and some occasional joint pain my silly body handled that drug like any good druggie!  Fast forward to July.  I went to the doc had a good report got home and subsequently got sick.  Yup thats the way us lemons like to do it!  Due to a decline in lung function from this sickness and several missed days of work I contacted my doc and was told I needed to be seen.  So back to Duke I went less then 10 days after getting home.  (on the bright side I reached A list status with the airline this year!)  Nothing came out of that trip and I was back to my normal life in a few days.  Then came last week.  I started to feel out of breath more than usual (this time without a change in altitude) without a cough or any signs of infection.  I checked my lung function and whooptie do, I’m down again and a decent amount at that.  An email to my doctor later and I have another trip planned out to the good ole’ NC, for a bronch.  YAY! At this point I have no idea what to expect.  Chronic rejection is a whole new world for me one that, assuming everything works out, will end in another transplant.  Definitely not something I am looking forward to by any means of the imagination but is a bridge I will cross, if and when it comes to it.  For now I try to live my life as best I can while balancing the ever increasing demands of this silly body and trying to adjust back to a similar lung status as I was a few years before my transplant.  I do fine when sitting still but get me walking or doing anything that requires a boost of oxygen and I am out of breath in a minute.  The weird part this time around is I don’t seem sick what so ever.  With CF you are hacking your lungs out all day long so its easy to see why you might be out of breath. This time I seem pretty normal but inside I feel like half of my lungs are missing or broken and I just can’t take a good breath. (which they kind of are).  So thats the dealio with me.  Just, you know, keeping life interesting. 

While all of this is going on I am still trying to maintain my full time job, a puppy (whom I absolutely adore!), teaching English part time (click here if you are interested in doing it too!  You can always contact me with questions Id love to help you get hired!), napping, shopping and watching all the cheesy Christmas movies Netflix has to offer. Plus you know trying to figure my life out and what my next steps are like any normal post college 20 something does.  Saying I have a lot going on is a bit of an understatement, just ask my kitchen and sink full of dishes or the clothes that I pull out of the dryer to wear each day.

Until next time!

Go do something fun! Life is short, LIVE IT!

Lesson from a transplant

Hi Guys!
Well first off I had yet another doctors appointment this past week.  I met with both the transplant docs and my cancer doc.  Both reports were pretty good.  It's funny because I have had such a change in how I view doctors appointments.  I used to dread going to the doctor, pretty much every doctors appointment meant another hospital stay.  Now I almost like going.  Don't get me wrong it's not that I enjoy spending hours siting in waiting rooms and wasting two days at the airport just to have a doctor look at me for five minutes, but going to the doctor has become an enjoyable experience.  It is a chance for me to see how much I have improved and to show the doctors how good I'm doing!  This visit in particular was met with raving reviews from my cancer doc and his student.  Much to my grandmother's delight, who was with us this trip, he called me the poster child for PTLD!  I also got to see my beautiful X-ray.  I unfortunately did not get a copy of it but let me just tell you it was so big and black!  Those lungs have really expanded and cleared out!  I have a couple more appointments to go before my doc month is over (I see all my docs every 3 months and they all seem to occur at the same time), this time these are here so much less time consuming!  After that I'm a free woman until September!

Few!  With that update out of the way we can get on to bigger and better things.  The real reason for this bolg.  Transplant is a very intense process and it is impossible for a person to go through it without having their life completely change and not just in the obvious ways.  Yes I have a huge scare across my chest and a few more along my neck and stomach but those are a small change in comparison to how it has change me as a person.  In fact their are so many changes that I am going to spare you the novel post and break it up into smaller chunks!  Thats right I'm back on the blog wagon!  Lets buckle up (are there seatbelts in wagons?  Maybe these days!) hold on and dive into our journey of LESSONS FROM A TRANSPLANT:


Lesson 1: Patience
How to Wait

I am no expert in this field, in fact I still kind of suck at waiting for some things.  However I have had a LOT of experience waiting for big things to happen.  Besides the obvious, waiting on the list for lungs, I have spent time waiting to get listed, waiting to go home, waiting to go back to school, waiting to feel better, waiting, waiting and more waiting.  I have spent the good part of the past two years simply waiting.

What I have learned is that waiting just happens.  It's one of the hardest and easiest things to do.  Like time the wait will pass whether you pay attention to it or not and that is the key, to not pay attention to it.  As anyone who has spent time in a waiting room, on a plane or on a car ride knows, the time passes faster when you have something to do, ideally something interesting or fun.  As a person who has spent long periods waiting (were talking months here)  I know that life doesn't stop when you wait and the time waiting is still time.  You can sit around miserable waiting for the time to pass or find something to do.

Definitely the hardest wait for me was the seemingly endless 19 days I waited on the list.  Now I know that sounds super short, and it was, but keep in mind I had already been waiting for about a month after we moved just to get listed.  I was not the greatest at this wait especially at first.  When the call came in that I was on the list I half expected to get lungs that night.  I even shoveled in my food (and by shovel I mean maybe eat at a barely normal speed, I was pre- transplant people I couldn't eat fast remember this X-Ray!  My esophagus was way over on my right there was no eating fast for this girl!), thinking I wouldn't have time to finish before the call came.  Well I did, as hours turned into days I realized the call wasn't coming anytime soon.  As I waited I began my first intense steps down the path for the waiting lesson.  These steps showed me to find something else to do.  I spent my days at rehab, napping, seeing friends and of course at our pitty dinners!  Pretty soon this chunk of the path was over and the next chunk began.

This is a path we all travel all life long but for the next two years my path would change from a fairly flat easy road to a steep mountain pass, covered in a jungle making it impossible to see the end.
As I climbed along I learned some tips along the way.

Another way I have learned to be content with waiting it to change the moment from being one you want to pass to one you want to remember and even possibly enjoy.  As I am currently waiting for my hair to grow back this lesson has been very clear.  My hair is super short and curly and although this is not a style I would have ever chosen on my own I am learning to enjoy it.  There are perks to short hair, its easy to deal with and never gets in the way.  I do have my moments when I really just want to pull it up in a ponytail or braid it but I have to remember that one day it will be long again and this period of short hair will be gone.

I still have a long way to go on this path, as I still struggle to wait for school to start, to be done with school and start my "adult" life, a relationship, my hair, but I have also come a long way!   

Kaelyn and I waiting for our appointments last week

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 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!

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, sing...eat, 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!

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!

beep, beep, beep

With nothing new to post in the world of transplant and the fact that I am still in the hospital and a bit board I figured it was time to back this thing up and give anyone out there wondering a quick, History of Anna (be sure to read that with the voice of one of those commercial voice over dudes! Trust me it adds to it!!)

So Grab on, here we go!
I was born, obviously, I'm pretty sure everyones story starts out the same.  I was born in Colorado, one of the few states at the time that checked for Cystic Fibrosis in the newborn screening.  My test was positive so further tests were done and it was confirmed a few weeks after I was born that I was the lovely "winner" of cystic fibrosis from the genetic lottery!

A quick note for those readers out there that are lucky enough to have no idea what Cystic Fibrosis, or CF as it is shortened to, is.  CF is a genetic disease that affects the mucous membranes of the body.  If you want to get all technical I could tell you that it specifically effects the protein that makes up the chlorine channels, causing them to either not work correctly or in some cases be nonexistent and is a recessive disease (meaning you need two mutated genes to get it).  This lovely mutation creates not so lovely thick sticky mucous that gets stuck in the various organs and organ systems it effects, mainly the lungs but also the digestive system.  The teeny tiny error in a CFers genetic code leads to some huge consequences, frequent and sever lung infections, digestive problems, malnutrition and insulin deficiencies being the main ones.  There is currently no cure for CF, at least not for most of the different mutations, but there are many medications that can help to slow the process.  In the end though, CF leads to death (though as I like to say, life leads to death....well that and cancer! )

Sounds fun, right?  

Okay children gather round as we dive back into this fabulous tale!

Due to my inability to develop a fantastically advanced memory at a young age I do not in fact remember most of my childhood so bare with me here as this information is slightly ...fuzzy.  I do not believe I had many problems with my CF as a young kid.  I did take enzymes when I ate and did nubulizer treatments I think daily.  I also did what is called CPT, which is where someone, my parents, would pound on my chest to help loosen things up. (I have no idea what it stands for I would guess chest percussion therapy...?)  When I was I think 4ish I got the wonderfully exciting vest machine (it is actually a bit exciting) which replaced CPT.  As far as hospital stays I did not have many, and none for "normal" CF reasons.  I was in the hospital I believe for testing when I was really little and then again at maybe 3 or 4 because I got pneumonia and was not getting better.  I also think I was in the hospital after having a bronchoscopy, where they put a camera down your throat and look at your lungs.  During the bronch they tried to open up my lungs more and instead ended up releasing a bunch of bacteria which made me pretty sick.  Again I have no actual memories of any of this so it is purely what I remember being told but overall I think I had a pretty healthy and normal early childhood.

And then I turned 9...
at 9 years old my friend CF decided to awaken and get busy.  It launched its first attack on me in October of 2000.  After seeing the doctor for one of my regular check ups he decided it was time for me to join the world of other CFers and experience the wonderful invention of a "tune-up".  A tune-up is where you take a person with CF from their normal life, put them in a hospital for at least 2 weeks and pump them full of drugs, while doing nublizer and vest treatments 4 times a day and shoveling in as much food as possible in a full fledged counter attack on CF.  Now I know how great this sounds to the normal person, but imagine for a second that you are a nine year old kid who frankly doesn't feel sick at all.  (Oh yeah and its also almost Halloween)  In addition to the horribleness they call the hospital, which I like to refer to as jail, it was also discovered that I was the happy home to the superbug MRSA.  This got me, at the time, a one way ticket to the "isolation zone" a crazy world confined to four small walls, where visitors wear yellow "banana" suits and the only access to the outside world is a window with built in curtains that faces a parking garage.  Again did I mention it was almost Halloween and I was 9.  Then because this wasn't exciting enough I was put on steroids, which don't mix so well with me.  These drugs give me a ton of energy, make me CRAZY and send my blood sugar through the roof, we're talking high 400s to 500s here (normal is 70s-low 100s).  This made for a very unpleasant experience for both my mother (who stayed with me) and myself.  Luckily I have mostly blocked out this and subsequent hospital stays, though I do remember some details, trick-or-treating in my room by knocking on the bathroom door and having my mom pretend to be different people and giving me candy being one of them.  Luckily as most policies in the hospital like to do, the MRSA policy changed, allowing a person to be taken off isolation if they had a negative MRSA test enough times.  I thankfully only tested positive for MRSA that one fateful October so when the policy changed I was taken off of isolation and let me tell you what a world of difference that did for me psychologically.  There is just something to seeing people in normal clothes and knowing I can leave my room if the desire were to strike.  

I was in and out of the hospital a few times a year from then on.  It became a routine almost, go in for a check-up be told I needed a tune up, be pumped up with drugs, go crazy, get out, be happy and then do it all again.  

By 7th grade the decision was made that I needed more support nutritionally and surgery was scheduled to have a g-tube put in.  I have had it for 8 and a half years now and have finally made peace with it.  I also, thankfully, don't really remember not having it or the entire process of getting it which helps.  I do know two things; it hurt and it took a while before it stopped hurting. I have just recently started using my g-tube every night while I sleep, which is the typical CFer way to rock the tube!  The night feeds are helping me though, so although my lungs are going downhill my weight is the best it has ever been! (well almost)

As far as my lungs go they are doing pretty bad, obviously.  In February or 2011 I got pretty sick and was in the hospital for a few weeks.  During that time it was discovered that my right lung had pretty much collapsed, we tried to get it to reopen but with no luck.  Since that time I have done fairly well and felt decent for me but have definitely been very limited in what I can do.  This past winter I made the decision to move to Phoenix for school.  I loved it in Phoenix but unfortunately due to the lower elevation had a lot of trouble when I would return home.  I ended up getting pretty sick over spring break and never really recovered from that.  That brings us to now.  I am currently on my second hospital stay since I have been home for the summer.  I was only home a total of 13 days before I felt the need to return here. I am also on oxygen 24/7.  I had known oxygen was needed when I returned to the hospital the last time but hoped I could be weened off of it completely.  This has not been the case and instead it is seeming that I will be entirely oxygen dependent until I get my new lungs.  Hopefully that will be sooner rather than later but until then I am learning how to deal with yet another aspect of my CF. 

What do all those crazy words mean????
Here is a list, with explanation of the various things I do on a daily basis for anyone thinking a nebulizer is some futuristic zombie tranquilizing gun and the vest, is the latest fashion trend that only CFers seem to be in on.


     Enzymes: Yes these are exactly what they sound like.  They
              are digestive enzymes to help replace the ones     
              that my body can't produce.  I take them any time I         
              eat.
    The Vest: It is indeed a vest though I would not say it is    
              very fashionable.  The vest part hooks up to a 
              machine and fills with air that is vibrated.  It 
              helps to loosen the stuff in my lungs.
   Nebulizer: Blows air through a special mouth piece cup thing 
              that holds a liquid, usually medication but 
              sometimes just salt water.  This liquid is then
              turned into a vapor and breathed in.  This helps my 
              lungs either by loosening or thinning mucous or 
              delivering antibiotics, it just depends on what
              liquid I put in the cup.
      G-Tube: A small tube that is inserted through the skin into 
              the stomach.  It allows me to be feed formula by a 
              pump while I am sleeping.
     Insulin: Used to regulate blood sugar.  Most people make it
              naturally but if not it can be taken as a shot.

This is by no means a complete list but it gives you an idea of what I do.  If you have any questions please feel free to ask, I like answering them!

  
             

Hello Blogging World

My name is Anna (hi Anna).  Okay so maybe I'm not so new to this whole blogging thing (I'll admit I have had quite a few "rough" starts) but I am starting fresh and have a plan to keep this thing rolling,or scrolling, as I head down this new, scary, terrifying, slow, interesting, exciting and, probably a few feelings I haven't even thought of yet, path in my life.  

For those of you who do not already know or who are just now tuning (clicking?) into the craziness that is Anna I have officially decided to get a lung transplant (eek), or at least go down that road in the hopes that I get accepted and in a few short long months it all works out and I am the happy and, for the first time much more, healthy new home to a fabulous "gently used" pair of lungs!  

My hope is that this blog is a place for me to share my experience with others on a regular basis and without having to individually tell everyone of you what is going on with me (though I am sure I will do a bit of that as well!)  So buckle up and enjoy the ride!  

I have just started the whole transplant process and actually don't even think the official doctor talk between my current CF team and the transplant center has even happened yet so in the world of transplant there isn't really much to report.  

So in other news....

I got my port de-accessed and then re-accessed for the first time ever today.  (i'm not even sure those are the right terms but hey makes sense to me!)  I was pretty nervous about it but it went really well.  Taking off the first dressing made my skin, super itchy but this is the same as it has been with my piccs so I was used to that part.  The nurse put numbing cream on the site so it would not hurt when it got re-accesed, then I was free for a bit.  It was nice not having all the tape and tubing on/in my arm so I am liking that aspect of the port.  Putting the new needle in freaked me out a tiny bit but it wasn't bad at all. I am not sure if the numbing cream worked because I did feel the needle but it was super quick and barely hurt at all.   I'm not sure if this is just how it is with ports or if it wasn't numb enough, the times I have had the numbing cream for blood draws I did not feel the needle at all so I guess I will find out next time.  We left out the cavilon, a type of skin prep, since I am suspecting it may be the culprit of my allergy, again only time will tell.

Not much else to report on today, pretty much same old same old here in the Children's Hospital.  I think I will put a post up later with some of my background but for now this is all you get so enjoy!

Peace out home skillets