It is Congenital Heart Defect Awareness week and I never thought in a million years how important this week would be to me for the rest of my life. When anyone finds out that I have had Open Heart Surgery, whether I’ve just met this person or have known for awhile, the immediate reaction is, “oh my gosh, you are so young.” Now, at times, it aggravates me that thats what people think, but I am not going to get angry at every person who thinks I have developed Coronary Artery Disease at the age of 23, but rather educate what my health problem is. I did not develop Cornary Artery Disease at the age of 23, but was a late diagnosis for a Congenital Heart Defect in January of 2012. Coronary Artery and Congenital are two competely different issues of the heart. A Congenital Heart Defect is a problem of the heart that was present at birth. Most babies born with CHD are detected right away and either have Open heart Surgery or are watched as they grow up. Then, they are some people who live almost a quarter of a century not knowing their is anything majorly wrong with the structure and functioning of their heart. I fall into the second category mentioned 🙂 I get asked a lot about my story and since it is Congenital Heart Defect awareness week, I figured now would be the time to share and educate.
I graduated with my undergrad in Early Childhood Education in December of 2011. After a couple of interviews, I landed my first “adult” job in the beginning of January. Like other jobs, a physical was required to be able to start working at this new job. Scheduled my physical for the following week. All was good and then a murmur was heard. It was not a typical murmur heard, but rather a relatively soft one that you need an extremely well trained ear for. As this concerned my nurse practitioner, I had to promise her I would follow through with an echocardiogram(an ultrasound of the heart) or she wouldn’t sign the form. At this point, I had never shown any signs or symptoms of CHD so I thought she was nuts, but I’ll follow through with my promise and move on. The following week I had the echocardiogram done and the next morning received a phone call from the nurse practitioner stating I had 2 holes in my heart and she wanted me to see a Cardiologist right away. I still thought she was just crazy, but for my own worry some personality, I thought it may not be such a bad idea. So, I see a cardiologist for the first time in my entire life and he was BAFFLED! Between looking at my EKG’s and echos, he was puzzled and thought it was best to refer me to a team of people that deal with Congenital Heart Defects. A this point, I feel perfectly fine, making descent money, and thought my lack of energy was normal from just from having completed college. So, I decided to sort of move on from all these odd doctors appointments and start really living my new adult life. I got a brand new car, was looking into apartments and hung out with my family and friends. It was great. A couple of months went by and I got a phone call from the Childrens Hospital of Philadelphia looking to see if I could follow up from my what my local cardiologists sent to them. At this point, I was looking at another great job opportunity and when you work with kids, they mostly likely will require a physical. I got offered a wonderful job and accepted it. This specific place had their own health care facility and were able to give physicals for free. As a fairly recent college graduate, this was a no brainer to get it done through them. Boy was I wrong. Of course, a murmur was heard. And this time, I didn’t get the signature to sign off. I thought to myself, why are all these people saying there is something wrong, but can’t figure it out. It was probably one of the most confusing times for me in my life. So, I called the Adult Congenital heart Center-a joint program between the Children’s Hospital of Philadephia and Penn Medicine. I managed to make my way to the big city all by myself thinking it would be a quick in and out type of appointment. On June 22,2012 I was diagnosed with a VSD, ASD and a cleft in my mitral valve. Still to this day, these terms confuse the heck out of me, but man are they powerful words. In other words, I had a huge hole in between my right and left ventricle along with a cleft or slit in my mitral valve. The sentence I thought I would never hear in my life came out of 3 different doctors mouths that day. “The only way to fix this is unforuntely through Open Heart Surgery.” Yes, I remember word for word and the way it was told to me. I remember that day like it was yesterday. I don’t think I have every cried like that in front of such high end professional doctors. But I learned I am only human. I remember getting in my car after leaving the appointment and broke down for hours. My world had literally been turned upside down. As I went to grab the parking ticket in my purse to pay, I accidently grabbed my rosary that I got in Poland from when I studied abroad in college instead. I’ll admit, a part of me wanted to throw it back in my purse, but deep down I knew this was going to be the biggest test of my faith. I had my first Open Heart Surgery on August 28, 2012. The weeks leading up to that day were something I have no words for. That day made me have to do something, I never really thought I would have to ever do in my life. Give everything to God. It was one of THE hardest and saddest things in my life because at the time of saying good bye to your family, so many emotions are present. Being taken back to the OR room, I had this unexplainable amount of peace within in me. I knew God would guide my surgeons hands, that my heart would restart normally after being on Bypass and that he would be with me throughout the whole recovery process as that is a whole other ordeal. Here I am 2 and half years later typing this 🙂 God is good. Yes, there are great, good and bad days, but I am alive and able to live a life that if that murmur wasn’t discovered, I may not have. I am a big advocate for physicals. Heck, I owe my life to that nurse practitioner for saving my mine and not to sound like a commerical, but it could save yours too! 🙂
If you have kept up this far, I applaud you and am so grateful as it is a heavy and emotional topic that needs more awareness as it is the #1 birth defect in America.
That is my story. It’s not done as those who get Open Heart Surgery are never “fixed.” I am beyond blessed to know as of today, my little heart is keeping up pretty well and I pray everyday that it continues. Living with a Congenital Heart Defect is one of my many vocations in life. It is something that I have to live out each and every day of my life and do it in the best way I can. Although, it wasn’t a “calling” for me to live with CHD, I look at it as a way for me to love my broken heart in a way I didn’t think possible. There are days that I absolute suck at this part, but I learn that’s its ok to have sucky days. My scar is something I cherish every single day. It is a raw reminder of all the suffering I endured, but helps me realize how Christ truly died on the cross for my sins. I have met some amazing people because of this journey and I wouldn’t change it for anything. CHD is something I will have for the rest of my life and I hope and pray I never lose sight how life is the most precious gift we are given. Please help spread the word about Congenital Heart Defects and pray for those who struggle every day physically, mentally and emotionally. My goal is that someone might stumble upon this blog in searching for hope and answers the way I did 3 years ago and may find peace and comfort knowing the Lord will provide. Thank you for letting me share my story:)