We continue the New Diagnosis series with Mary Beth Meyers’ story. Diagnosed at the age of 23, Mary Beth shares how she had to put her dreams on hold due to an undetected CHD.
In May of 2012, I was a newly graduated young woman, with hopes and dreams to begin working with children, meet my husband, and have a family someday. All that came crashing down the day I was diagnosed with a heart defect. A few months after turning 23, having just earned a degree in Early Childhood Education, I learned that I was born with an undiagnosed Congenital Heart Defect(CHD). My specific CHD is an Atrioventricular Canal defect, which isn’t just one, but rather a group of small defects that include an ASD, a VSD and possible abnormalities of the AV valves(mitral and tricuspid). Since this defect can only be repaired by surgery, I am now a two time open heart surgery survivor. I had my 1st surgery in August 2012 and a full mitral valve replacement in May of 2015(pig valve). I will be facing my third open heart this coming Summer.
Every since that sucky diagnosis day, life has been an absolute roller coaster ride. One filled with many fears, unknowns, and blessings. The physical, mental, and financial aspect has been draining, not just on me, but family, especially my parents. I know my parents would blow through their savings and sell everything they owned to keep me alive, but as an adult patient, who is quite aware of how stressful finances can be, there is always that sense of guilt running through my mind. I have to remind myself everyday to count my blessings and that somehow God provides, not just for me, but for my parents too.
Being a late diagnosis has it’s pros and cons. My childhood was thankfully a normal one, even though knowing about my CHD would have explained all those years of being “tired,” rather than writing them off as laziness. My childhood wasn’t filled with surgeries, multiple hospital stays, doctors appointments, and trauma of not being able to communicate or understand what was going on.
For me, however, the cons outweigh the pros. Not knowing for so long your heart was in overload for the majority of your childhood and all of your teenage years can add up to some hefty damage. Sometimes waiting can do more harm than good. And in my case, I, along with my parents and care team, wonder if doctors had intervened early on, would I be facing my third open heart surgery in under 6 years. Unfortunately, that’s something we will never find out, but I firmly believe, the earlier intervention, the better the outcome. Of course, it’s not something to dwell on, but rather be grateful that my diagnosis was found in my early twenties, rather than my fifties, or worse, during an autopsy.
Trying to become a young adult after getting through my 1st surgery has been anything but easy. Open heart surgery changes you physically, mentally, and emotionally. You are not the same person. Trying to navigate through life with something you know will never go away and brings a ton of physical and emotional pain can be draining. Not to mention, it’s financially draining. It forces you and your family to make sacrifices in so many areas. That’s not necessarily a bad thing, but when it consumes your whole life, for the rest of your life, it can seem unfair and downright exhausting. It makes you feel like you don’t know where you belong in this world. All your hopes and dreams keep getting delayed, and you wonder, with another open heart around the corner, if they will actually ever come true.
My late heart diagnosis has left me confused, angry, and jealous. Jealous of family and friends building their careers, gaining independence, experiencing marriage and motherhood. The hardest part is realizing, because you survived, that you are here for a reason, yet you feel like a failure. You feel like a failure at times because you are struggling to become the independent adult you thought you’d be since childhood, having no idea then that your defect existed. Even though a few years have passed since my diagnosis, there are still days where it is hard to swallow the news of this disease. But there is a lot I cannot change in my life, I can only keep moving forward with a new perspective.
One of my favorite quotes that I’ve come to lean on is, ”Accept the things you cannot change, the courage to change the things you can, and the wisdom to know the difference.” I had no idea this is what my life would become, but everyday is gift. If you find yourself in a similar situation, surround yourself with family, friends, and a community of patients like you. It has shaped me into a person I’d never imagined I would be, and, now, I couldn’t imagine my life any other way.
Mary Beth Meyer is a 29 year old, living with an AV Canal Defect. With a late diagnosis at the age of 23, she has since undergone two open heart surgeries. Her most recent was a full Mitral valve replacement. Mary Beth graduated college from Franciscan University in 2011, and is currently pursuing a masters degree in Elementary Education at Holy Family University. She loves being an aunt to two beautiful nieces and a handsome nephew. She loves her faith, family, and a good peppermint latte. As the author of Mimi’s Open Heart blog, Mary Beth shares the good, bad, and amazing things about having a congenital heart defect. You can find her on Facebook @Mimi’s Open Heart or Instagram @mimisopenheart.