My NEW Testamony

If I had a dime for every time I have told this story, I'd be a very rich woman and paying for medical bills would be no big deal. haha. I honestly don't mind telling my story though, because when you hear it, you can't say that God didn't OWN the situation.  Keep reading and you'll see why....For those few of you that I haven't told the story to, or have only heard bits and pieces through facebook get ready to hear it straight from the horse's mouth.  At one point there was a rumor on facebook that I was in a coma.  I was never in a coma, although I WAS in very bad shape.  To a lot of people I'm sure it seems like I had a "drive through transplant."  I mean 3 weeks is a very short time frame to get sick, have a transplant, and be discharged.  I'm sure that probably makes it seem to some like it really wasn't a big deal.  It WAS a big deal.  Those that saw me in the hospital saw how jaundice and sick I was.  They saw how important it was that I get a new liver AND FAST.  They saw me gain 60 lbs of fluid.  They saw me not recognizing people and not being able to answer simple questions  Some described me as looking like "the walking dead."  I would agree.  Without my transplant as soon as I got it, I wouldn't be sitting here typing this today.

Some of the details of this story are very blurry to me.  That's because I had very high ammonia levels.  Basically, my liver was 90% dead tissue and was not able to filter out ammonia (among other things.)  When your ammonia levels are high, you are not "with it."  There were times in the hospital before my transplant that I thought my sister was my 97 year old great grandmother.  There were times that I didn't know my fiance.  Most of the time I also thought I was at Redmond instead of Emory.  Let me start at the beginning and recall the details (the best I can.)

The last couple of weeks of school in May I was not feeling well.  I couldn't put my finger on what was wrong, but I knew I didn't feel right.  Come to think about it I wasn't feeling well for a while.  My parents begged me to go to Steeple Chase with them (in April) and I decided I would rather spend my Saturday laying in bed.  I was just fatigued.  The last couple of days of school, I told friends, my principal and Mrs. BJ that I wasn't feeling well.  I could only describe it as what I thought it felt like to have low blood sugar.  I just felt shaky. Three days after school got out, I went to my doctor and told him "I'm terrified of needles, but I think I need blood work.  He listened to my heart and thought I needed an EKG since my heart rate was high.  The EKG was normal so basically he felt like I had anxiety and prescribed me anti-anxiety medication.  No urinalysis, no blood work.....needless to say he really dropped the ball and he's not my doctor anymore.

That was on a Friday.  The following Tuesday I decided to go to the doctor's office where my sister worked for blood work.  I was so weak that  my mom had to come over to my house and dry my hair for me.  But thank God I listened to my gut and went.  By this point, my urine was the color of sweet tea.  My liver enzymes came back in the 2000's and 3000's when they are supposed to be between 40 and 50.  That night, my sister encouraged my parents to take me to the emergency room.  Apparently the doctor's where she worked were really concerned.  I remember my whole family came to my house and told me they were taking me to the hospital.  For some reason (ammonia levels probably) I kept talking about Britney Spears and how she was hospitalized against her will. hahaha.  Also, according to my mom and dad, I almost stepped off my front porch.  I don't remember that at all.

So, just to fast forward through some things, I went to Redmond and didn't stay the night.  I ended up getting a HIDA scan a few days later in which they inject you with something to check your liver.  I had already canceled one appointment because of my high ammonia levels.  I just wasn't in my right mind.  I was in such bad shape that they direct admitted me to Kennestone immediately after the scan.  Well they wanted me to go through the Emergency room, but my mom got me a direct admit and wouldn't settle for less.  I stayed there over night.  I had the worst roommate.  She kept complaining that I had guests after hours but this was after she heard us praying.  I think she was a non-believer.  She got transferred to another room thank goodness.

Kennestone was an important part of my journey and new testimony. Here's why:  My doctor at Kennestone told me he would feel more comfortable sending me to a more specialized hospital that is capable of handling liver issues.  Ok, I thought...I still didn't think it was that bad.  So...he says "I have done all the paperwork and I'm sending you to Piedmont."  "I don't want to go to Piedmont," I said.  When he asked me why, I told him that I personally knew someone that had a liver transplant at Emory.  Not that I thought I was going to have a transplant, but I knew they obviously knew their stuff when it came to livers.  I think the doctor thought my mom was trying to control the situation because when she left the room he asked me if I was sure I wanted to go to Emory.  He kept pushing Piedmont on me.  My mom had no idea which place was best.  She just wanted me to get well.  I really think God was telling me to go to Emory.  This is an important part of the story because later on, I would have to be put on a MARS machine (liver dialysis) that would keep me alive until they found a donor for me.  There are only 5 MARS machines in the U.S. and ONE in the South East.  That ONE machine was at Emory and I was the 19th person to ever use it.  God was definitely guiding my decisions despite the cloudiness in my head.

Once the room was ready at Emory, they took me by Ambulance.  I asked my Dad to ride with me and he did.  Once they pushed the gurney off the elevator onto 7G (7th Heaven) the first thing my dad and I saw was "Liver Transplant Floor."  I immediately freaked out.  I held my Dad's hand and said "Dad, do you know something I don't know?" With tears in his eyes, he told me that he knew as much as I knew.  We were both scared.

I settled into my room and we met the Physician's Assistant and he told me they would need 23 vials of blood.  WHAT?!?  I am, no I WAS terrified of needles.  My dad had the best idea though.  He got me a grape Fanta (because I was scared I was going to pass out) and he told me to put my sleeping mask on so I wouldn't have to watch. I was a BIG BABY when it came to needles.  Not anymore though.  He held my hand the whole time.  Honestly, the rest of my stint at Emory wont be in chronological order because it all runs together, but every morning at 4:30 a.m. I would get woken up by the sneak attack from the phlebotomist. That was the worse!

One day, a group of psychologists came in my room and were asking me all of these crazy questions.  One question that stands out was: "Do billboards talk to you when you pass them?"  Um, excuse me?  What???  They asked me questions like what my home life was like and if my parents make me feel inferior and if I have ever wanted to take my own life?  UM, NO, NO, and NO.  They then gave me this paper test that when I looked at I thought was easy.  There were a lot of 2nd grade standards I had taught like drawing the time on a clock....I thought I aced the test, but it turns out I didn't.  There again....high ammonia levels.

At one point they took me over to the eye doctor at Emory to check me for Wilson's disease which is a build up of copper in the blood and affects the liver.  I was praying that was what it was, because I REALLY didn't want to have a biopsy.  That was negative.  A few days later, I had a trans jugular biopsy.  The normal liver biopsy is a needle put through your side that takes a string size piece of liver out for testing.  This however would go down through my jugular to get a piece of my liver for testing.  I'm still not sure why they chose a trans jugular biopsy for me. I do know I was in bad shape and every news I got was "cushioned" so I didn't get worried or upset.  Apparently what was supposed to be a 2 hour biopsy lasted over 6 hours because I had a hard time waking  up from the anesthesia. 

We got the results a couple of days later.  The verdict was autoimmune hepatitis.  For those of you that don't know hepatitis means "OF THE LIVER."  I always tell people that I have autoimmune of the liver because people are not informed about the word hepatitis.  They think of it like Hepatitis A,B,C,D,E which it's not at all.  They also told us my liver was 90% dead tissue.  I will never forget my very pretty woman doctor saying "But that makes you an excellent candidate for a liver transplant!"  She said it with excitement.  All I remember doing is taking a big breath and gulp and letting it all sink in.  They had been telling me I might go home before my biopsy, so this was a drastic turn in the road.

The next few days were definitely a blur.  During one of the rounds my doctors and surgeons were making, I started throwing up.  It was then, that they sent me down to ICU.  I don't remember being in ICU before my transplant.  I only remember it afterwards.  During my stint in ICU, I was placed on the MARS machine which I mentioned earlier in this post.  When they were putting the lines in my neck, I remember screaming bloody murder.  I don't recall any pain, but I felt suffocated because they had to cover my face while they were putting in the lines on both sides of my neck.  Apparently I was on the MARS machine for 8 hours.  The only thing I remember of this 8 hours was them calling in the chaplain and me praying to God.  This was the first time I really felt like I was going to die.  When they call the chaplain in, that's usually not a good thing.  Every breath I took felt like it was going to be my last one.  I kept seeing the light so I felt like I was about to go.  I remember praying to God that if I was about to die, please let me not be so aware.  I felt very aware of every breath I took.  It felt and sounded like a machine was breathing for me.  I decided (or God decided) that I wasn't going to give up.  All I could think about was my mom and dad and how I didn't want to leave them like this.  It broke my heart that I was breaking theirs.

Either during the MARS machine or right after I got off the MARS machine, they found a match for me.  THANK GOD!  I was within days of passing.  Again, I don't remember getting the news of a match, but I'm sure it was an amazing moment for my family.  I'm not really sure how long it took for the liver to make it to Emory, because the last thing I remember before my operation was my parents waiting in Pre-Op with me.  It was very calming for me to have them there with me right up until the end.  I remember my mom kept asking where the liver was and at one time they said it had just landed at Hartsfield Jackson Airport and another time they said it was going down Memorial Drive.  How fitting.  It was like having a Santa tracker on that thing.

After my transplant, I woke up and they were still asking me the crazy questions like "What day is it?" "Where are you at?" etc....at first I think I was still getting them wrong, but I always knew my parents, I knew my cat's name, and Chipper Jones' baseball number.  Before my transplant I thought if I got the answers wrong that I would fail the test and not get the liver....no one told me otherwise.  So when I got the questions wrong again, I told my mom I was scared I wouldn't get a liver because of it.  She said "You already have your liver! You are good honey!"  What.a.relief.  The first thing I said to my dad when I woke up was "I didn't know someone could go this long without eating or drinking." It had been DAYS because I was at the top of the list and surgery could be at anytime! My cousins Josh and Katlyn made sure I had PLENTY of Chik Fil A sweet tea when I woke up since I could only have clear liquids.  That qualified!!

It wasn't even 2 whole days when I got moved back up to 7G from ICU.  I was so excited because quite honestly those were the best nurses in the hospital.  Some of those nurses I will keep in touch with for the rest of my life. (Nurse Susan and Nurse Lauren came to my birthday party that my aunt threw for me.)  That's when I'd say my recovery REALLY started.  I got moved back up on a Saturday I think, and by Wednesday I was being discharged.  I haven't looked back since.

Here are some ways that God had his hand on me before, during, and after my transplant:
-God waited for me to get out of school for the Summer before I got sick.
-A year ago from my transplant date, I didn't have health insurance.  If you don't have insurance or a way to pay for your VERY EXPENSIVE ($2000 a month without insurance) medicines to take care of your gift, you aren't getting a transplant.
-Last open enrollment (last year) I signed up for short term and long term disability not even sure why I was doing that.  God was guiding that decision all the way.
-God guided my decision to go to Emory where in my opinion THE BEST OF THE BEST work and save lives every day.  Also, they had the MARS machine that I needed to live.
-The surgeon told my parents that the liver immediately started working and they wished they had the liver that I was gifted for all of their patients.
-God has provided for me in little ways such as receiving an overpay check from escrow in the mail, and receiving a gift from some very special people in my life that told me God spoke to them and told them they needed to help me.

So in a nutshell, that's my story.  I'm sure I've left out a lot.  I know I've left out my donor and everyone that was there for me during this time, but I'm saving those for their own blog post. I think this will be very therapeutic for me being able to write about my experiences and bring organ donation awareness to everyone.  I pray every single night that God will show me my purpose.  He saved me for a reason.  He's got huge plans for me and I can't wait to find out what they are.

XOXO
God Bless

P.S.  I wrote this post in green, because that's the color of the organ donation awareness ribon. :)
P.S.S.  Bear with me while I make my blog cute.  It's been quite a long time since I've blogged.