Given One Week
My life has always been a bit of a struggle. I was born with a single ventricle heart and with that, I have had many trials and tribulations. However, I have always been blessed with so many opportunities and have learned many lessons. I don't know how my life would be without having this disease.
Last rites and baptism
I was born at US Naval Hospital in Newport, Rhode Island and then transported to Brown University in Providence Rhode Island at three days old. A priest performed my last rites and baptism on my fourth day of life while at Brown University. The doctors did not think I was going to make it because of my congenital heart disease. At that time most children born with this disease were not expected to live past their first week of life.
Beating the odds
As I survived my first week, my life expectancy was then extended until age one. My parents were told that most children with this disease still didn’t live a year. I lived through age one and at the age of five, I had my first open-heart surgery. After this surgery, my life expectancy was extended to the age of seventeen. Late teens were the age that most children with this disorder lived.
Since I have done so well and surpassed all the doctors’ original expectations, my life expectancy has been extended to my sixties. My life expectancy will most likely still go up due to new advancing technologies and better surgeries.
Single ventricle heart disease
My illness is referred to as congenital heart disease. Specifically, single ventricle heart disease. Most people are born with four chambers in their heart. Two atriums (our holding chambers) and two ventricles (our pumping chambers). I was born with three; one ventricle and two functioning atriums. After my first surgery at UCLA called a Fontan procedure, they turned my right atrium into my missing right ventricle. My right atrium has subsequently been eliminated.
At age seventeen, with my second open-heart surgery, which is called a Fontan revision, my right atrium was eliminated. This Fontan revision was performed due to my right atrium wearing out. Our atria are not designed to take the burden of a ventricle, at least not for a long duration. This surgery was performed at Rady Children's Hospital-San Diego, when and where I received my first pacemaker.
I now have two chambers left in my heart, one ventricle, and one atrium. Both of these are functioning left chambers. My heart disease causes me shortness of breath, lack of oxygen (cyanosis), and irregular heartbeats. This disease also prevents me from living in or visiting most mountain areas due to the high altitudes and the lower oxygen levels in these regions.
I am extremely grateful
People look at me and have no idea that I am running around with heart disease. This is not something that you can see. Heart disease is internal and sometimes you deal with it alone as well. For some people, not letting others know their struggles can sometimes be even harder than going through the battle of this disease. I am proud that I have gone through a lot in my life and I am still here to talk about it.
I have learned so many lessons that I am extremely grateful for. When you have spent a lot of time in the hospital as a child you tend to grow up fast and gain a unique understanding of life and death. In other ways, you often find joy in the little things much as any child would. Taking life for granted is something that I never have done and I am grateful for every single day. We never know when our last day will come. All we can do is be strong and fight for another day.
Do you use exercise to help manage your heart failure?