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January 12, 2014. My one year Anniversary!

So my one year anniversary was 10 days ago.  I am so grateful to be alive and spending time with my beautiful wife and the blessing of my two kids.  My daughter will be turning six soon and my son just turned two.  If it was not for my wife I do not know how I would have made it. I have had a good year.  No rejections from my new heart.  I just had my yearly check-up and everything looked good.  I got to come down to 5mg on my Predizone.  That made me really happy.  I have been sick a couple of times with a cold and the stomach flu.  The stomach thing really kicked me down.  I have been very blessed this year with not getting too sick.  I have been fighting with my weight all year and it has won the battle.  I got out of the hospital at 192lbs.  I am now 270lbs.  This is a new year and I am ahead.  I have lost five pounds and I am on my way back to my healthy weight.  I have set myself small goes to keep me on track this year.  So the big question I have for everyone is what you guys think is appropriate to write to the donor family.  My heart transplant team told me to wait a year and it is know time.  I really want to write, but I don't know where to start.  There is so much I want to say and tell them about the second chance I have at last.  I don't want to overwhelm them or bring up that bad day for them.  I really want to be in contact with them.  I just want my first letter to be something that gives them hope and feels the hearts with the love that I have.  I don't want it to be negative.  Should I type or hand write.  My hand writing is not that good from the shakes I have from the meds. I am truly thankful and have so much I want to share.


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My 25 days not in reality

 I could feel my heart pounding really fast.  I think if you looked at my neck you could see my pulse exploding out of my neck.  My dad said, “Son get ready.  We are going to take you to the hospital on the other side of Brevard.”  I didn’t really know what was going on.  I could feel myself lying there, but I could not move.  My wife was right there by my side.  There were also people there that I did not know.  We were at my dad’s friend’s house and he was a doctor, I think.  I was in a weird place.  This guy was my dad’s friend, but I did not know him.  I could see the guy’s wife and some of his friends and I think they were having a cookout.       

Next thing I know, they were loading me into a motorcycle trailer.  My wife said, “Ashley, you are going to be ok, trust me.”  I was trembling at this point not knowing what was going on.  I could hear the rumble of what I thought was the motorcycle engine.  The sweat was dripping off my forehead, my hands were clammy, and I could feel my moist shirt sticking to my body.  All of a sudden I was in a hospital on a boat.  I could hear the fog horn and feel the boat on the waves. The doctor told my wife, “We are going to take him down for a test to see if he qualifies for the prize.”  I could feel my legs trembling and tremors in my body from not knowing what was going on.  I was rolling down the hall at this time, in what I could see was a wheel chair. The nurse rolled me up beside a door and said, “Mr. Fullerton, you wait right here and I will be back.”  There was no one around that I knew.  I didn’t know where I was and couldn’t see anyone that I knew.  I had a thousand thoughts racing through my mind.  I tried to get up and walk away, but I could not seem to move.  I was wondering what was going on.

 I could hear the fog horn on the ship once again and could hear the captain speaking.  He broadcasted over the intercom that Ashley Fullerton had won the big prize.  All of the sudden the captain was standing in front of me.  I was startled, how did he get in front of me so fast?  I could feel my chest getting constricted.  It was getting troublesome for me to breath.  I could hear my wife say, “Ashley, calm down. You are ok.”  I couldn’t see her, but I could hear her voice.  The captain said to me, “Mr. Fullerton we have found you a shark, but you will have to wrestle it in order to get your heart.”  I was out of my mind.  What was this ridiculous captain talking about?  He was being very irrational.  I wasn’t about to get in a big fish tank with a shark.  I already felt like I could not move.  The male nurse told me, “Ashley, we are going to have to get up and try to walk to get you in shape for your heart from the shark.” At this point, I could feel my whole body shivering.  I was starting to breathe faster and faster.  My legs were shaking while I was sitting in the wheel chair.

 Now everyone was gone again.  There was no one there.  It was just me sitting beside this room.  I pushed a button on the wall.  It sounded like the room was filling up with water.  Images of the unseen wander through my imagination.  It’s all so strange, the wonder of it all.  Then I heard the male nurse say to me, “It’s almost your time to go in the tank through that door and get your heart.” I felt like a child laying in the bed hoping that a monster doesn’t come out of the closet.  I could feel a churning in my stomach and dryness in my throat.  I had this feeling of anxiety while waiting to see what was behind this door.  I was in a negative emotional state and was worried about my well-being.  I had this feeling of agitation, like I was in the presence of danger.  I was feeling like I needed to run but I couldn’t move.  I was confused, trembling, and felt like I could faint at any second.

I woke up with my pulse rate in overdrive.  I could see my wife standing beside me.  She said, “Ashley, are you ok”?  I told her yes and asked her where I was at.  She said “You are at Duke University Hospital.  You were diagnosed with heart failure and you just got out of ICU.  You are hooked up to a Bivad machine which is keeping you alive until you can get a heart transplant.”  I was in shock and disbelief and could not believe what was happening to me. The last thing I remembered was that I was at Pardee hospital with pneumonia on November 18, 2012.  It was now December 12, 2012, and I had been in an induced coma for twenty five days.  This was all fresh news to me and I was troubled by it.

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I belive in a purpose driven life

                Everyone has a purpose in life and has a significance in the world, but which path we take to find it is a choice that we have to make on our own.  I believe that God has a purpose for everyone, whether they are good or evil.  We can either take the long hard road to fulfill our purpose in life or we can let God guide us down the easier path. I believe everything on earth serves some kind of purpose to the world’s existence.  I am not sure if I have always believed this, but I sure do now.  I do not know my purpose in life yet, but I do however think that I am getting closer to finding it out with every waking hour.  I believe we all have a task in this world. No matter who we are, we have to do something before we die.

 It can be as little as letting someone cut in front of me in line at the supermarket or as big as influencing billions of people into my way of thinking.  These purposes all add up to a bigger picture.  For example, let’s say that the person I let cut in front of me was thinking about committing suicide and my nice gesture led them to believe that there is good in the world.  They went off and became the leader of a new revolution that helped the world in many ways.  God has a path for me as he does everyone, and for the last twenty years I think I have taken the long road.

                What makes me a believer know?  In November of 2012, I was diagnosed with heart failure.  The doctors did not think I was going to make it out of Mission Hospital, but I did.  I was transported to Duke University Medical where I received a heart transplant in January 2013.  I survived a Bi-vad surgery and a heart transplant, and it has been six months since and I think I am doing great.  For me, there is only one reason I made it through all of this, God was by my side and I haven’t fulfilled my purpose in life yet.  This is why I believe God did not take me home with him.

                I am not sure what my purpose is, maybe it’s to raise my children so the world will be a better place.  To raise them without hatred and prejudice and teach them to love people and treat people with respect.  It may be to teach my children that different religions are ok and not every believes in the same thing and to fill their lives with love and not hate. To teach them to live their life under the guidance of the God that they believe in and he will guide them down the right path.  As long as I live I will give my family every day I have on earth.

                Sometimes if the weight of the world is too much to bear, just remember that God will always be there.  I thought that for a time to be a good father and husband was to take care of my family financially.   There is so much more to life than just being a good provider.  Anyone can be a good provider, but you have to be a leader spiritually.  We should teach our kids right from wrong.  Men need to be a faithful husband and love their wives like no other.  I think this is part of a man’s purpose for being placed on earth.  I found out that being just a provider is not good enough.  I have to be there for my family emotionally, spiritually, and physically.  If my purpose in life is being the best father I can be and the best husband a woman can ask for, then I have a great job to do. 

                I think that it is our purpose in life or our responsibilities in life to raise our children to make the world a better place for them and their children to come.  Making our life and that of those we love, or even those you don't, more meaningful, leaving a legacy of love and kindness to others, maybe even leaving the world richer by us being in it, that's what matters.

                I've spent a long time being this negative person, allowing too much of the tragedy in the world to affect me, allowing too much of other people's negativity to affect me.  Life's too short to dwell on negativity, it's too short to spend it slaving away at things just because it's what's expected of us. I feel like I'm finally starting to see what life is really all about and how I should be living it. Love is the most important thing. Second to that is wonder, not the baseless, empty wonder, but the wonder that science strengthens. 

                It turns out that no one can imagine what's really coming in our lives. We can plan, and do what we enjoy, but we can't expect our plans to work out. Some of them might, while most probably won't. Inventions and ideas will appear, and events will occur, that we could never foresee. That's neither bad nor good, but it is real.  I think you just need to believe that we are here to serve a higher purpose in life.  Whether we believe in the afterlife or not we are here for a reason, so we need to enjoy our lives and figure out how to make the world a better place.

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Where I am at now.

I am now seven months post transplant.  I had was major rejection when I was about a month out.  Since then I have had zero rejection.  My heart biopsy's are scheduled for every two month now instead of every month.  All in all I think I am doing pretty well. When I went into the hospital I was 230 lbs.  When I came out of the hospital I was 192ght lbs.  I am now 260lbs.  It has been a real struggle with my weight.  I still have hand tremors and good days and bad ones.  I am so thankful to be alive.

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My Heart Transplant Story

On November 18th, 2012 I was admitted to Pardee Hospital for what I thought was pneumonia.  The same day, I was flown to Mission hospital by helicopter due to Respiratory failure.  I was at Mission a total of about two days.  They had to shock my heart back into rhythm 13 times because I was in an arrhythmia called vtach, or ventricular tachycardia.  The head cardiologist at Mission told my wife that I was in heart failure and that there was nothing that Mission doctors could do for me.  He said he was referring me to Duke University Medical Center for a heart transplant assessment and that I was the sickest patient in the hospital.  Life Flight from Duke came and picked me up at mission on November 20th and flew me to Duke.  All this time I was in an induced coma and on a ventilator.  I didn’t know anything that was going on at this time.  The last thing I remember was talking to a nurse in the Pardee Hospital ER.  Everyone had their doubts that I would make it out of Mission alive. 

I got to Duke University in about an hour and forty minutes by helicopter.  I was taken straight to the seventh floor ICU unit.  There, they were able to get my heart under control with medication.  I was now running a fever of 104.  They were putting ice water in my stomach and packing me down with ice trying to get my temperature down.  No one could figure out why I was running a temperature.  I had many teams of doctors at Duke looking at me.  These doctors are the best in the country and have one of the leading heart failure teams.  Meanwhile, while the doctors were trying to figure out why I had the fever my heart started going downhill again.

When I was admitted to Duke, they did a battery of tests, one of which was a catheterization.  This test showed that my heart’s ejection factor was 15%.  A normal person has an ejection factor somewhere between 50-60%.  My heart was so weak that it could not keep the fluid moving forward and as a result, fluid was back flowing into my lungs, which was causing the respiratory failure.  Each time I was taken off the ventilator, my lungs would fill with fluid within 24 hours and I would have to be re-incubated.  The doctors tried many tactics to help my heart.  One thing they attempted was to put a balloon in to support my hearts pressures.  This did nothing to help and I ended up being put on a bi-ventricular assist device, also known as a bi-vad.

This machine is 400 pounds and the size of a washing machine.  Four cannulas were inserted into my heart and were also attached to the bi-vad, exiting through four holes in my stomach.  This machine did all the work of my heart for my body while they got me listed for a heart transplant.  I got the bi-vad machine on December 4th.  I was in ICU for a couple of days and then moved to step down at the 3300 unit.  This is where the fun started to begin for me.  I was awake and finally realized that I had been in the Hospital for the last 17 days.  I had no idea what was going on.  I was on so many drugs before I didn’t know the reality of what was happening to me.

Now I was on the 3300 unit floor.  This was step down for me.  I think it was December 6th when I arrived in room 3310.  When I got down there I had my amazing wife that had been by my side from the beginning. The nurses got me up for the first time this day to start walking.  I stood up got dizzy and had to sit back down.  My first nurse in 3300 name was Hope.  I have more to tell about her later because I didn’t get her again as my nurse until later down the line.  The Doctors came in to see me and told me all that I had been through and what was going on with my machine and how it worked.  Dr. Milano was the surgeon that done my Bi-Vad surgery.  This is one great man and one hell of a surgeon.  All the risk that come along with me having this surgery, this man told my wife he would give it his all and he saved my life.  I thank God every day for putting me in the hands of this man.

We got a call about two weeks into waiting on my transplant.  They said we have a donor heart and Dr. Manny was on his way to get it and check it out.  We got prepped and done all of the blood work.  In came Dr. Manny telling me that the family of the donor wanted to give it to someone they knew that needed it.  Dr. Manny was very sad for me.  I could see it in his eyes.  I was ok with it because I have faith that God new it wasn’t the right heart for me.

I got a call early Saturday morning on January 12, 2013.  They had found me another match.  It was hopefully the one for me.  I was called around 3am and they come in and done all of my blood work and then we waited.  I was rolled down to the ER about 9:30 am that Saturday morning.  They were prepping me for the heart transplant and that’s the last thing I remember until I woke up in the ICU recovery room.  I woke up just in time to see Atlanta kick the winning field goal in the playoff game.  I was under for about 12 hours, they really didn’t start the surgery until around 3:00 pm.  They had some trouble going to get the heart because the fog was so bad.  Then the wind picked up and pushed the fog out and they were off to get my heart.  Dr. Shrouder was the man that done my heart transplant.  Thank God again for another awesome surgeon and a great man. I can not speak highly enough about this man.  I was released from the hospital on January 20, 2013 a week and a day after my heart transplant.

I wanted to speak a little bit on the best thing that has ever happened to me in my life, which was the day I meet my lovely bride.  Kimberly Fullerton has been the inspiration in my life.  She is the glue that holds our family together.  The storms of life were blowing in and she was there the whole time to shield me and my kids.  I wouldn’t have made it through the last three months without her.  I would fall apart without her.  I don’t know how she did what she did.  She was with me every day while I was in the hospital not knowing what was going to happen next and had our 15 month old boy and 5 year old girl to worry about also.  Kimberly makes me feel like I can overcome anything.  I still get choked up every time this woman tells me she loves me.  There is no doubt about it that heaven sent me her, she is like an angel from above that watches over me.

From this experience I have learnd who you have been is not who you have to be.  I always thought that working all the time was a good thing, I was supporting my family and giving them what they needed, but the whole time I think they need a husband and a father.  This new journey in life is going to be an uphill climb.  I look in the mirror and see a man that is not as good as he is going to be but better then he used to be. I am changing my career path from what I am doing to getting an education were I can spend more time with the most important three people in my life.  I take every day one heartbeat at a time. Life may not be the party we hoped for but while we are here we might as well dance.

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