Breathe In...Breathe Out...

This morning I was running around like a crazy person, as usual, getting ready to leave for work and trying to be on time and in the midst of that my dad called me and asked me to put the garbage pails at the top of the drive way so I ran up the driveway, garbage pail in tow (which is bigger than me) put it at the top and ran back down to my car.  When I finally buckled my self in my seat I realized how out of breath I was and so before I drove away I stopped and HAD to catch my breath.  As I was sitting there I realized how much of my life I've spent out of breath...

 My half heart can only get oxygen to my body so fast and when I rush and run and use up a lot of energy, I get out of breath. When I was first born I was purple and after my first surgeries  I was finally able to get oxygenated blood to my body.  That doesn't change the fact that as my heart and lungs work hand-in-hand, the harder my heart as to work to; the harder my lungs have to work as well.  So, out of breath is a way of life for me.  

Obviously I'm not a runner.  I've tried to run and that never ends well.  I played sports when I was little (soccer) with my dad as the assistant coach so he can take me out to catch my breath when I needed to.  My sister and I used to have "races" around the house, but she used to give me a head start...and then still beat me.  The humidity has been hard on me too, it's hard to breath on humid days (or when I take too long and too hot a shower...).  Although I skipped most of gym in middle and high school with a "doctor's note" but that doesn't stop me from liking sports and wanting to play.  In college I played Intramural flag football and soccer, I and still love to play when I can.  Of course my breath leaves me quickly and I have to stop and take a break.  I've learned my limits and how far I can push before I start to "hurt". To by quite honest, running is invigorating (for all you "intellectual" types it releases endorphins...and those make you happy) so I like to pretend I can run; even if it's just for seconds.  

I remember one time I was in London with my church and we were in the Underground.  We got off our stop and had a HUGE flight of stairs in front of us.  Everyone started to run up the stairs as fast as they could singing the "Eye of the Tiger" song and pretending they were Rocky. I knew that my chest would heart after and I knew that people with me would "freak out" when they saw me running (because...I'm very 'fragile' to many people...we can talk about THAT another day) but I made a decision to do it.  I ran up each and every one of those stairs!  I pushed myself and felt like I was flying.  Did my chest hurt after?  Yes.  Did I need to sit down and catch my breath?  Yes.  Did I laugh and enjoy every second of it?  YES!  As I've grown up I've had to learn what "worth it in the end" really means and this was one of those times.  

My faith in Christ runs deep, and I know that because He has my heart (as he's had since first created it) I will be with Him in Heaven one day and when I get there, I will have a perfect body, free from any pain or disease or congenital heart defect and once that happens...I plan on running FASTER than the wind...

Emily 

The Story of Me

So I have decided to write this blog to tell my story.  As the title states I have half a heart and this blog is going to be my way of sharing my story with....any one who wants to read it.  I have known that what I've gone through, what I still go through has a greater purpose then just a good "survivor" story.  God has given me so much more than life and I want to share that too...with anyone who wants to read it.  So, here it is.  The story of me. 

I was born in June 1987 on Long Island.  I was the first child of my amazing parents Jayne and Gerard.  My mother was induced because I was late and shortly after they did an emergency C-Section because they were not happy with my heart rate. Upon my arrival I was blue and at first they thought it was because the cord was wrapped around my neck 3 times but once that was undone and I started to cry, I turned purple.  Bright purple.  I was taken away immediately and my mom never even got a chance to hold me.

They ran tons and tons of tests and decided then rushed me off to St. Francis Heart Hospital in Roslyn NY.  My dad and my grandpa followed behind the ambulance and my grandma stayed with my mom.  At St. Francis my dad met my Cardiologist; Dr. Rietman.  From the moment my dad met him, he gave my him peace and reassured my dad that my he didn't fear for my life.  More tests revealed that I had an ASD and Tricuspid Atresia.  In non-medical terms that means that I have no Right Ventricle and a hole in my Right Atrium that was allowing the mixing of oxygenated and deoxygenated blood and sending it through my body. (Hence my bluish/purple color.)

My dad went back to visit my mom to be with her, as I was being taken care of by excellent doctors and nurses and aunts who have never left my side.  He made a quick stop to eat with his parents first, to celebrate his first Father's Day.  :)

After two weeks I was finally allowed to go home after a plan had been put in action.  I was a purple, sickly baby who put my parents through...a TON.  At 2 months old I had a shunt placed in my back to redirect the blood flow and my purple color disappeared.  A two years old I had another shunt put in on the other side.  But I was still sick.  Walking up the stairs was an effort that made me out of breath.  I got sick a lot and when I did, it was flu like.  Blood work, IV's, and pills the size of fingers were a way of life for me.  I slept a lot and tired out easier than most 2 year old.  At this point my sister had been born (she is 13 months younger) and she was just as big as me, faster MUCH more energetic than I ever could be. 

Shortly after I turned 3 my family, (uncle and grandparents included) treked to Boston Children's Hospital where I had open heart surgery.  The doctors did what is called a Fontan Procedure.  In simple words, they rerouted my blood to bypass the right side of my heart and closed the hole in the wall of the right atrium. I came out of surgery a whole new me...well with new hardware at least. :)  I was there for about two weeks and sent home with lots of meds and pain, which subsided (after a slight infection that almost sent me back to the hospital...) and here I am.  25 years old, 3 scars, 3 surgeries and a life time of living with half a heart under my belt.

In future posts I will share more about my meds, my memories, my day to to day struggles, doctor visits, and what all this has meant for growing up "normal" and what my "adult" life might look like.  

Before I end this for today, I want to share two bible verses.  My family and I are people of faith, Christians who believe in power of Christ and the cross.  The first verse was shown to my mom by my aunts shorty after I was born and has been "mine" ever since.  Jeremiah 29:11 "For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, to give you a hope and a future."  The other verse is story in the bible where Jesus tell us that a mans illness he has from birth is not a mistake or because of a sin, but so that God can get the glory for his life.  John 9:1-3 "As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi,who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

Thanks for listening to the story of me.  I have to go take my dig....;)

Emily <3 i="i">