My Story as a CHD Patient
Thank you for visiting my fundraising page for the Congenital Heart Walk. Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to me.
23 years ago, I was born with a congenital heart defect that was failed to be detected before birth. My specific condition is known as "DILV" or "double inlet left ventricle". When this defect is present, the left and right atrias of the heart are both connected to the left ventricle, and the right ventricle is barely developed. Instead of oxygen-poor blood traveling through the right atria and right ventricle, then traveling to the lungs to pick up oxygen via the pulmonary artery, it travels through the left atria and left ventricle and mixes with the oxygen-rich blood which is then distributed throughout the body.
The most common treatment is what has come to be known as the "Fontan Procedure", a 3 step open-heart surgery. I had to undergo my first open heart surgery at just a few days old, surgery two occured at 6 months old, and my final procedure occured at 2 years old.
Living with DILV or a CHD is different for everyone, but has been fairly easy for me. I haven't had any side effects/complications besides infrequent tachycardia. I haven't had to undergo any follow up procedures since my Fontan, besides a few heart catherizations or cardiac ablations. I take medicines daily to help lessen my heart's heavy workload (my heart works twice as hard as yours!), visit the cardiologist twice a year, workout when I can (even though it's extra tiring for me, the heart is a muscle that I need to use more) and that's about it! It may be a serious condition, but besides the fact that it ruins the chance of me ever being an olympic athlete, and I have a handful of scars on my abdomen and chest (#ZipperClub!!!!) I'm living a pretty normal life..... AND I have a really great icebreaker to use when meeting someone new (seriously, the amount of times I've told someone about my CHD within 20 minutes of meeting them or used it in a 'two truth and a lie' situation could be alarming to some people, but hey, it's pretty cool to me!).
This wonderful life I live wouldn't be possible without any of the incredible cardiologists I've ever come in contact with, cardologists and researchers round the world and of course, Children's Healthcare of Atlanta. CHD Awareness and research is very close to my heart. Did you know the Fontan procedure that saved my life was only first performed 28 years before I was born? That may seem like a lot, but in the medical realm that procedure was just a baby when it was performed on me! The next life-saving procedure may be right around the corner from it's first performance and can be possible with just a little more funding and research.
By donating to Congenital Heart Defect Research, you are not only supporting me, my walk, and my struggles, you are supporting Congenital Heart Patients all over the United States and honoring the ones that lost their lives due to their condition. 1 in 100 babies born will be effected by CHD, any and every donation helps enrich the lives of those effected and those yet to be born that will be effected. Thank you so much in advance.
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