Realizing Just How Much Better I feel...

I always thought I felt fine before.  I never felt sick.  I never let things stop me.  I always just existed how I felt I was to exist.  I held onto a job and worked myself silly.  I stayed out until ungodly hours of the night. I honestly thought I felt what was normal.

Oh boy was I wrong.  Even now, just 5 months out, I feel amazing.  I have so much more energy.  I'm perky.  I wanna go and live life.  But, above all, I truly feel healthy.  I feel strong.  My spirits are up, and I'm realizing that once again, I have a future.  One that I can plan for instead of living day to day, in the here and now.  And, I have to admit, it's really quite nice.

Four Months and the Little Things

Its about four months after my surgery, and I'm really ready to start talking about it.  Not that it was a bad experience or anything, it just seemed that was all I was talking about and I needed a break.  In the past 4 months, I've been through quite a bit.  I went through some rejection at first, meaning my bilirubin got really high, making me jaundice to the point of looking green.  It also caused me to be in and out of the hospital a lot the first month after my surgery, with the surgeons trying to figure out what was going on.  I had to have a biopsy on my liver, done through my jugular vein, and two other biopsy's done through my side, just to check up on the status of my new liver's rejection.  I had some constriction on the bile duct connection with my new liver.  The GI docs ended up putting a stint in to open up the passageway.  This still didn't put my bilirubin in a decreasing effect, so the surgeons decided to restart my liver.  So, they pumped me full of steroids and upped all my dosages of my anti-rejection medications.

Finally, everything started to head in the right direction, after about two months.  My yellow skin tone started fading, and I started looking like a normal person.  I started putting on a little weight again, and feeling a little bit stronger.  And, since then, things have continually gotten better.  Sure some of my numbers are a little hay-wire.  But, like I've always said, if there are gonna be any off the wall side-effects, I'll be the one to get them.  So, in turn, I've learned to just take all the little quirky things with stride and not let them get me down.  Just have had to learn how to get around them.  Like the shakey hands, the headaches, and my hair starting to fall out.  Sure, they're not what I want, but if my liver is running okay, then I'm okay with those little things.  They kind of make me who I am now.

Picture timeline of my hospital stay.

All the machines I was hooked up to.

Just a few hours after my surgery.

Hard to believe that's me...

Another post op...

First day out of ICU

The tubes in my neck.

The incision

Turning more yellow

Finally getting to go home.

What does that mean?

January 26th, 2011 at about 3 pm and I'm just getting ready to lay down to take a nap, when my phone decides to ring.  Knowing it was OHSU, I was just expecting the call to be for setting up an appointment that I'd been trying to schedule.  I was actually taken back when it was Charlene, my pre-transplant coordinator.  And here was how the conversation went...

Me:  Hello?
Charlene: Hello, is this Jamie?
Me:  Yeah...
Charlene:  Hi Jamie.  It's Charlene from OHSU.  I'm calling to let you know we've got a donor for you.
Me:  What does that mean?
Charlene:  That means we've got a liver for you.
(At this point the shock starts to set in)
Me:  Oh, I suppose that means I should get myself to the hospital...

I made my phone calls to my family members and got my stuff ready.  At this point, I was slowly feeling the jitters of getting scared.  I hadn't myself, gotten the call before, and there was just something that felt different about this time.

Getting up to the hospital, I knew the pre-procedure for the surgery.  The nurses got me all ready and then I had all night to sit and wonder if this time was actually it.  As the time went by, I became more and more nervous, because that meant it was more a possibility that I would really be getting my transplant finally.  I got to the hospital around 4 pm on the 26th, and my surgery was scheduled for 6 am on the 27th.

That morning, the nurses were in and out of my room.  Finally around 7 am they took me down for my surgery.  I was extremely scared.  I didn't know what I was getting myself into.  My "Pit Crew" (my team of nurses), didn't leave my side.  One of the nurses held my hand from when I was in my room, up until the anesthetic knocked me out.  I was very fortunate to feel cared about by so many people that I'd just met.  These were the amazing people that kept me at ease as I was experiencing the last moments of my life as I knew it pre-transplant.  Life was never going to be the same for me.

3 years, and feeling my life is stuck on repeat.

It's safe to say, the next 3 years weren't too easy for me.  I felt like I was a scratched record, and my life was repeating the same thing over and over again.  When finding out I needed to get listed on the transplant list, I had to change my whole way of life.  I had to quit my job, due to the fact that I just had lost a lot of my energy, and the doctors appointments made it hard to work with a hectic schedule.  It was also the only way that I could keep my health insurance.  

I also had really started staying in more.  There were many reasons to this.  I didn't have the energy,  I didn't have the income, and slowly just didn't have much motivation.  I did anything I could to keep my mind off of my current situation.  I immersed myself into video games and the internet, just so I didn't have to think about my liver and being sick.  It definitely did its job, that's for sure.  I had to keep myself as healthy as possible, because even the common cold was resulting in me making a trip to the ER to get myself looked at.  My spleen was very enlarged and blood couldn't even flow through it normally, causing it to have mini "strokes".  Basically, any little complication with any part of my health resulted in me going to the hospital, and half the time getting admitted.

After a year of my liver scores pulling the roller-coaster effect on me, I was told that I might not have to wait much longer.  It finally looked like I was trying to crawl my way up the liver transplant list.  A couple months later I got to experience my first "dry run".  Basically I was a backup for the person that was actually supposed to receive the liver, just incase something were to go wrong.  That was the most uneasy feeling I had ever felt.  To have to go in and be prepped and ready for surgery and then not know if I was even going to be getting anything.  They got me all ready and then were told to send me home, because it was a "Go", on the other patient.  So I went back home and continued to live the life I'd been living.

I rode the roller-coaster for another 2 years or so before I got another "dry run" call.  This time not getting the liver because the surgeons felt it wasn't a close enough match, and I still was healthy enough to be picky and wait for that perfect transplant.  So, once again, the surgeons sent me home.  This time was different though.  That was because I knew I was getting more and more sick.  My swollen spleen (which was caused by my liver) was crowding all my organs and consuming all my white blood cells, causing me to be neutropenic (when your body has a very low white blood cell count, and can't fight off infections) many times.  My stomach was beginning to swell, which made it very difficult to eat.  It also caused me to get very nauseous whenever I would eat.  I had also began getting very bad tremors in my hands.  All of these things were signs of the final stages of liver failure.

I knew I was getting to the end of my rope.  I masked the fact that I was scared with other emotions, such as anger, sadness, and frustration.  I had actually started to give up on the thought of ever actually getting my transplant.  I was taking everything out on those I cared about, and I was realizing that I had some true anger problems.  This went on for the last 6 months of my waiting process.  I had become someone I didn't even really know anymore.

You can only be invincible for so long.

Many young people live their lives thinking that they're invincible.  They do what they want, and they think that nothing can harm them.  Kids are starting to drink and do drugs from a younger age these days.  And they don't realize just what effects it is having on them.

This is where I differed from kids growing up.  I never really had the option to do those things, because I knew that it would compromise the state of my already fragile liver.  It was hard knowing that I was so different from my friends, but I tried my hardest to not let it get to me.  And though I tried to not let that stuff get to me, I made my friends treat me like I was normal.  I still would go out with my friends, and watch them do the stupid stuff that teens do.  I just never had the ability to participate in them.  I guess you could say this made me grow up faster than most kids my age.  I went from being a kid, to being an adult.  I chose to separate myself from the "party scene" and whatnot, so I wouldn't be tempted into trying things.  Comprimising my health was never an option, because I was barely holding onto my liver as it was.  But I didn't let my liver, live my life.  I didn't think about my liver at all times, and so in a way I still lived like I was invincible.

It wasn't until I was 21 years old, that I realized that people aren't invincible.  That was when I wound up sick enough to end up in the hospital.  It was a week being admitted in the hospital before the doctors realized that my liver was the cause of all my problems, and a liver specialist came in to inform me that it was time that I work on getting myself listed on the transplant list.  It was like being hit with a sack of bricks.  Learning that death really is a real thing that it can happen at anytime.  I learned in that moment that  I wasn't invincible.

Learning I was sick, from a young age.

Like my dad stated, we learned about my liver being sick when I was about 10 years old.  It was the beginning of the summer before I went into 5th grade, and one of my close friends at the time had come down with mono.  My family had all noticed that I'd been looking a little "yellow" (aka jaundice), so they set up an appointment with my pediatrician to get me tested to see if I had come down with mono as well.

That was the first time I'd ever had a blood test.  The thought of that kinda scared me, but the lady drawing my blood told me I was braver than some grown men that came in there.   The results came back showing that I didn't have mono, but I was still really jaundice.  This was worrisome to my doctor, and he decided to test me for every type of hepatitis.  This went on for the whole summer, and many tests later, and my doctor decided it was time to send me to a specialist.

This was my first encounter with Dr. Barclay.  He was a stern, straight to the point man.  He told my parents that he wanted to do a biopsy on my liver, to figure out the diagnosis of what exactly was wrong with my liver.  He had an idea at what he thought it might be, but he wanted to confirm it with the biopsy.  So, I came home from school, and my mom sat me down and explained to me what he'd said, and then explained to me what a biopsy was.  Think about how scary that would be, to hear as a young kid, that you are going to have a long needle stuck into your side, so they can take a piece of your liver tissue to run tests on it.  I was TERRIFIED.

Going into the hospital with my parents the morning of the procedure, I didn't know what to think.  The first thing they had me do was put on a hospital gown and get into the hospital bed (which in the children's wing, somewhat resembled a giant crib).  I had brought my collection of stuffed animals with me, so I would have something comforting there with me.  Then the nurses came to give me an IV, and oh man, did I swear I was going to break my dad's fingers from squeezing them so hard.  Not long after that, they wheeled my bed into the room where they were going to do my biopsy, gave me the anesthetic, and I was out.  It felt like I'd just fallen asleep and woken up, and it was all over with.

The next morning, Dr. Barclay came into my hospital room and told my family that I had a rare form of hepatitis known as, Chronic Active Auto-Immune Hepatitis (non-contagious, hereditary, only found in women, and very rare.)  Basically, this meant my liver was being rejected by my other organs like a transplant, and had developed a lot of scar tissue on it.  This changed a lot of things for me.  It meant, I'd never be able to have alcohol,  I had to take anti-rejection medications, and that there was a good chance that one day I might have to have a liver transplant.

I guess one day came sooner than later.

--Jamie