Something wasn’t right.
For 23 straight years, my health was overwhelmingly unremarkable. I went in and out of my annual doctor's visits with no further recommendations other than to keep up with my multivitamin. But, beginning over the summer of 2015, something wasn’t right.
Stomach issues were my first sign of an underlying problem. I started getting sick after eating meals, and my mom insisted it wasn't normal. This started the first of many trips back home to Scranton, PA. My dad is a physician and quickly had me in with a gastroenterologist. The next few months were filled with follow up appointments. A food journal ruled out dietary triggers. An upper gastrointestinal series confirmed my digestive tract was in good health. I felt like I was constantly running back to my childhood home for tests, while literally running as I trained for my third marathon.
Thanksgiving came and following the Philadelphia Marathon I returned to the hospital – this time for a CAT Scan of my stomach. I remember laying on the cold scanner, thinking that maybe something wasn’t wrong. If months of appointments and tests revealed nothing, what good would come from more? Twenty minutes later, the radiologist came back with a finding: my stomach looked perfectly fine he said, but the scan caught the bottom of my heart, which looked enlarged.
December 28, 2015 was my first cardiology visit. In this appointment, I learned of my heart murmur and high blood pressure. I received my first cardiac ultrasound, which indicated that I likely had an undetected congenital heart defect. A heart defect? I was having stomach problems, not heart issues -- and I just I completed a full marathon one month earlier. It didn’t make sense.
2016 started off on a tough foot for me and my family. We were referred to a cardiac specialist in NYC who diagnosed me with an Atrial Septal Defect (ASD). An ASD is a type of congenital heart defect that arises from a malformation (a hole) in the wall that separates the top two chambers of your heart. The hole causes inefficiencies as you re-circulate already cleaned blood back through your heart and lungs. Imagine trying to fill up a bathtub with water while the drain is open. The larger the drain opening – the more work is required to fill up the tub. Likewise, because my clean blood was ‘draining’ or getting pushed back through the hole every time my heart would beat, I had to work extra hard just to get out the clean blood my body needed. More work for the side of my heart that pumps blood meant it was more than twice the normal size.
There will never be enough thank you’s in the world for my parents, who, for every single cardiology appointment took off of work, and drove the three hours each way from Pennsylvania to NYC to be with me. We had to fix the hole. My stomach problems were the first sign of the ASD taking a toll on my body. If left untreated, my heart would continue to work overtime, and I likely would have gone into early cardiac failure.
The goal was to be a candidate for device closure, a procedure that would have me back at work in a week. A transesophageal echo would determine my eligibility. This procedure was nasty and required swallowing a camera attached to a scope for the technician to get an up-close view of the heart and hole. I distinctly remember coming out of my twilight sleep as my mom spoke to the technician who said, “the hole is big”.
It turned out that where my heart wall was meant to form I had a huge hole that was roughly the size of a golf ball (3.9 cm). Where two atria were supposed to exist, I virtually had one. Open heart surgery was my only option to fix the hole. Two weeks after my 24th birthday, I had my operation on April 14, 2016.
I tried to be tough. My personal method of dealing with the news and huge change in my life was to not talk about it. Very few friends and family knew of my appointments or impending surgery. The less people knew, the less I had to talk or think about it. I kept my worry and anxiety bottled up to the point where I came off as cold and unfazed. Two days before my surgery was my last day at work. My best friend walked me back to the PATH – it was with her parting hug that the tears started.
I cried from that moment continuously for the next 36 hours until they put me under for the operation. I cried because I was scared, because it was finally real. I cried because I was afraid I would be in pain, or that I wouldn’t wake up. I cried for the ten months of uncertainty and tests that brought me to this point. I cried because, why me?
And then I woke up – surrounded by my parents and extended family, my boyfriend, and my closest friends. I spent two nights in the Cardiac ICU before moving home. It was during my six weeks on short term disability that I started making jewelry. Stringing necklaces and bracelets was extremely therapeutic in my recovery. My Aunt Helen suggested we start selling the items at her boutique Gifted in New Jersey. Thus, out of unexpected open-heart surgery, OurWholeHeart was born.
OurWholeHeart started out with my heart, but quickly turned into an endeavor and jewelry business that’s backed by my entire family. My Aunt Helen shares her entrepreneur advice, my cousin Jenna helps create new designs, my mom is the accountant, while my dad and brother are constantly offering expansion ideas. My boyfriend will even help bead when he has to! Our jewelry line consists of handmade opal and Swarovski beaded bracelets and necklaces. For every item purchased from our line with a heart, we are proud to donate a portion of those profits towards the advancement of congenital heart defect research and treatment. We opened our Etsy website in 2017, and had a tremendous year growing and spreading the word about our efforts.
I am coming up on my two-year ‘heartiversary’. In this time I’ve grown stronger, I dropped 36 minutes off of my marathon time, and ran my fastest mile. I grew closer to my family and truly learned to never take a day for granted. I started a business. Most importantly I learned that “I” am a collection of all the wonderful people who helped me get through my toughest year. These are the friends and family who supported me, who sat with me, who went to appointments and held my hand, who brought me flowers, cards, coloring books and positivity. We got through it, and now in our own special way, we’re trying to give back with OurWholeHeart.
Stay tuned...OurWholeHeart is going to be selling her jewelry in our Shop!!
Photo Cred: LITTLE HOBOKEN PHOTOGRAPHY