Nick’s Story

Site created on June 26, 2019

Hello everyone! My name is Nick Burrus. I am thirty years old and I live in sunny California. I spent my entire life in California and New Mexico. Growing up, I was consistently sick. My parents had a tough time dealing with a child who would stop breathing, had non-stop heart issues and more.

At the age of four I was misdiagnosed with a bug bite. It ended up being a Japanese genetic disease known as Kawasaki Disease. We’re not entirely sure where it came from!

My heart had suffered some damage, and due to the congenital defects, it has always been weak. Over the years it has grown weaker and weaker. Today, I depend upon a CRT Pacemaker to stay alive. My heartbeat is from a machine. Not my own. I haven’t had my own unique heartbeat since December 2017.
 
Since that surgery, I have grown sicker and weaker. It is now at the point, where we’re not confident my heart will be strong enough for the next five years. It was decided to go and do a transplant. This is the start of a very long journey.  

Newest Update

Journal entry by Nick Burrus

Here are a few photographs from the past surgery, from when I was eighteen years old. This was twelve years ago on August 13, 2018. This was a trying time in my family's history. 

That time they tackled my aorta and valves. My left ventricle chamber became dangerously enlarged. They figured that was why I was always so sleepy. My heart couldn't pump blood properly to my body. The aortic valve wouldn't shut when pushing blood, so it kept growing larger trying to push more blood out, in turn making itself weaker.
 
When they went to crack open my chest cavity, the scar tissue from my previous surgery was attached to the walls of my heart, inominate vein, aorta and aortic valve. Thus, the cracking of my chest cavity shredded my heart. I died on the table.
 
The surgeon pulled a hail mary. 5 hour surgery turned into 15. They reconstructed the left ventricle chamber, by patching it up with donor tissue and masterful stitching. Tissue to shrink the size of the chamber, luckily the chamber wasn't too damaged. He had to reconstruct my inominate vein, by using donor parts, and reattaching it. My aorta was easily repairable, but, the aortic valve was a lost cause. He tried to repair it, but, ended up making an emergency decision. He replaced it with a mechanical valve.
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