Today is national wear red day for heart disease (something that is very important to me) so I figured it was the perfect time to begin to tell my story. Heart disease is the number one leading cause of death for women in America and worldwide. 1 in 3 women die of heart disease. The numbers are astronomical yet the funding for heart disease doesn't even come close to that of breast cancer and other illnesses. Heart disease is a serious disease that primarily is seen as affecting men or the elderly. As you can probably guess, my story has a little something (okay a lot) to do with heart disease. Even though this has always been a part of my life and I have no problem talking about this to anyone in person, I have been a bit apprehensive to share this online. I hope that my story can serve as a testimony to people of how important heart health is and how a n y o n e can be affected, not just your grandparents.
*The first portion of this (meaning today's post) is going to be pretty fact heavy. Everything talked about today happened within the first 7 months of my life but it is obviously prevalent to know the background before I can talk about how it has affected me my whole life as well as everybody in it.*
This is the "part one" of many parts to come.
I was born August 9, weighing 9 pounds even (or as the first nurse said "8 pounds 16 ounces!"). The delivery doctors and nurses thought everything looked great, but once I got to the nursery and they continued my assessment, the nurse listened to my heart and heard a distinct murmur. Other nurses and doctors listened and they decided to do an X-ray; they ended up seeing some cloudiness around my heart. They told my parents that night that it was either pneumonia, a heart defect, or a virus attacking my heart that would take my life within 24 hours. But there wouldn't be any answers until the next day, when the cardiologist would come in. At that point it was a waiting game.
The next morning my condition worsened, so the cardiologist came in early and did an echo. Through that he was able to determine that I had sub aortic stenosis, a VSD, and a double outlet right ventricle. This basically meant I had a hole in my heart which was pushing blood out in one direction and back in the other (making my heart inefficient) and a blockage in front of my ventricular valve.Without corrective surgery I would not survive. I was transferred to a different hospital to have surgery, on the 11th, two days after I was born I had open heart surgery to repair my heart. I was on a bypass machine for 4 hours and under hypothermic circulatory arrest for about 42 minutes (this is where they literally cool your body so much that your blood stops flowing). With that surgery they were able to repair the VSD, the double outlet right ventricle, and some of the stenosis. After that surgery I stayed in the hospital for two weeks until they thought I was stable enough to go home.
I did well at home for 6 months, but in February an echo showed that the stenosis had come back. They immediately took me to have a cath done so they could determine what was happening. During the cath I coded and went into tachycardia twice where they had to shock me back into rhythm. I stayed that night in the hospital and the next day (Friday) the doctors told my parents they needed to bring me back Monday for a second open heart surgery. This time around the doctor explained to my parents that he would need to be more aggressive with the surgery and would have to cut through the bundle of hiss (which is the connector tissue that tells your heart to beat). In doing so this would cause me to have complete heart block and be pacemaker dependent.
I was hooked to an external pacer for a couple of weeks so the swelling could go down and the doctors could watch how my heart was responding. When they turned the external pacer off and my ventricular side wouldn't work it was confirmed that I would need a pacemaker. The surgery gave me complete heart block which means that my atrium side respond's to my body's messages but can't transmit them to the ventricular side, which is why I'm completely dependent on a pacemaker. It reads the atrium side and shocks the ventricle side to beat.
All of this meant two things: I have congenital heart disease (meaning I have had it from birth) and I would have a pacemaker for the rest of my life.
This is a Polaroid taken the day I was born by one of the nurses in the NICU.
This was taken the day after my first open-heart surgery.
This was the first time my mom got to hold me since the day I was born.
This was the first day my sister met me. One of the nurses put bows on my visible wires because she wanted me to look pretty and didn't want to scare my sister who was 2 at the time.
My mom and I with my surgeon, Dr. Calhoun. I was coming home for the first time.
I am about a month old in this picture. This is after the first round of the major surgeries.
My sister and I playing at home. I am about a month old here as well.
This was the weekend I was home before my second big surgery.
My first day home after my second open heart surgery.
Thank you so much for reading this and letting me tell my story. All of the surgeries and hardships that I don't even remember completely changed my life and shaped me into who I am today. Having heart disease and a pacemaker don't define me, but it is a huge part of who I am. I'm sure in the midst of everything that was happening my parents and many people were probably thinking "why her? why us?". I have asked myself this question many times, but for the first time in my life I know why, to share my story and to encourage people that life is really, really messy but it's also really, really worth it.