The Rearview Mirror

First things first, there is only one day left to get a shirt, so if you haven't done so hop on over to booster and get your shirt before they are gone.
        

Click here to order one!

        May is Cystic Fibrosis awareness month.  I am not sure how much awareness CF actually gets with people who don't know anything about it, but as a person with CF it is definitely in the foreground.  All of this CF awareness really got me thinking (well that and my most recent trip to the doctor), although I still technically have CF it is almost as if I don't.  There is a saying about transplant, it is like trading one disease for another, and this past week has brought that statement to light, it really is true.  As I see all the post from CFers about their daily struggle it has become clearer than ever to me how different my life has become.  I no longer do nebs or my vest any more, in fact I take zero breathing medications.  I also hardly have a cough and if I do, it is usually an actual sign of something being up not just routine as it used to be.  At my doctors appointment this past week I was reminded of how difficult college life used to be.  Post transplanters have it easy.  Treatment consists of several pills a day and maybe, if you are like me, some insulin and blood sugar checks.  When you have CF lungs treatments have to be done in your room, with electricity and can take over an hour at least twice a day.  It can also be tricky to do treatments with a roommate.  Pills are easy to sneak, not so much when you are strapping on an inflatable vest and shaking and coughing for twenty minutes at a time.  I remember when I used to live with roommates before my transplant I would learn their class schedule and fit my treatments into that so I could do them when I was alone.  When going through my computer files the other day I found this.  It is a note about doing breathing treatments in college: 

            It was the moment of truth.  I quickly sprang to action, shutting the door, pulling out the huge bag from under my desk.  I shoved the grey plastic piece into the wall and the control panel came to life.  Click, clack, click came the nose of the clips as I fastened the contraption onto myself.  The machine roared to life.  Suddenly I was very aware of how quite everything around me was and how loud this machine could be.  “what does this thing sound like in the hall, will anyone notice, Oh dear God please let these walls be enough to keep the sound in…” I would think as the minutes ticked away.  DING, finally my time was up, treatment one, complete!

I am currently a college student living, in the dorms, with CF.  I can remember my first night at school and it was a rough one.  In addition to worrying about classes, where to eat, who I would hang out with, how long I could go without doing laundry, and how long a person can survive on ramen, I also had the additions of life with CF and how that would all fit into college life.  For me the hardest part was doing my treatments.  At home I would usually do them in the living room, alone.  I was often the only one home in the middle of the day and the last one up at night and that would allow me plenty of time to get things done.  In the dorms I was suddenly thrown into this weird universe where I went to bed “early” and there was always a handful of people around, even if not in my actually room they were for sure within ear shot.  I began to get really nervous about treatments.  As much as I wish I was the perfect patient and never let my fear keep me from taking care of myself, I would be lying if I said I always did my treatments starting on day one.  It took me a day or so to ease into the process.  I also waited until I learned my roommates schedule (yes I’m that creepy girl who knew when my roommate had class) so I could do my treatments, in semi aloneness.  I ended up setting up a rewards system for myself to get me to do my treatments.  Yes a 19 year old used a reward system like a 5 year old to do my treatments on a regular basis, but it worked!  

I began to do my treatments every single day and eventually I got the to the point where I would do them in front of other people.  I quickly learned it wasn't really a huge deal and most people were interested in what I had to do.  In fact one night I let some of my friends try out my vest and we all had a good laugh singing and talking while shaking!  In the end everything worked out.   

        

Going to bed was also a whole lot harder pre transplant.  I don't know about you (but I'm feeling 22...sorry, I couldn't help it) but I am usually pretty tired by the time I finally decide to go to bed.  I just want to climb into my nice warm bed and go to sleep and now I can.  Before my transplant it was a different story.  Bed time preparations consisted of filing a bag with formula giving a shot and hooking my pump up at best, all that plus an hour long breathing treatment at worst.  I know I could have done my evening treatment before bed and hooked up my tube feed before exhaustion hit me, but I seemed to like the extra torture of breathing in medication while my eyes slowly fell, only to be rudely awakened by the ding of the cycle timer of my vest.  
         I also eat a ton now and gain weight almost effortlessly.  My life basically revolves around food, eating food, thinking about eating food, making food, everything I do seems to involve food. Before I would miss meals without even realizing it, I was just never hungry.  To be completely honest, eating wasn't enjoyable.  Because of the way my lungs (lung really) were the enlarged left lung put a lot of pressure on my stomach and my esophagus was not quite in the right place.  This made if hard to swallow and difficult to breath if I ate very much (read as, slightly more than a 2 year old).  In fact for the last few months of my pre transplant life, I basically gave up eating all together and was living solely off of my tube feedings.  Since the calorie amount was easily controlled I did gain weight but barely.  Now,  my tube has been out for over a year and I have gained 25lbs in 6 months!  In fact, I have gained so much weight my doctor thought there might have been an error recording my weight at my last appointment (well until she saw me, I look like a normal person now!)   
        The biggest change since transplant is the ability to breath.  Let me tell you, breathing is awesome!  I am so thankful that I get to experience what most people take for granted.  I remember before my transplant thinking how nice it would be to not think about breathing so much.  Yes I actually was conscious of my breathing almost all the time.  When it works, you don't really feel it, breathing just happens, but when it's not working, oh boy, you are very aware of every single breath.  In, pain, suffocation... out, cough, cough, cough... in... over and over again.  Now I don't even realize it is happening!  
        Although transplant hasn't been all fun and games, it has definitely been an amazing improvement over my past life.  I am so thankful that I made the decision and was able to get a transplant.  Cystic Fibrosis is a terrible disease.  It sucks the life out of you as you are more and more incapable of sucking the oxygen out of the air.  

one of my last vest treatments, this was a day or two before my transplant

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!