My Name is Mary Beth
I am 30 years old
I am Imperfectly Perfect.
My name is Mary Beth Meyer and I was born with an Atrioventricular Canal defect, an ASD, VSD and cleft in my Mitral valve. I joined the 30 year old club in November of 2018 and reside in the Philadelphia area.
I was a late diagnosis at the age of 23. A month after I graduated from College, I needed a physical for my first ever adult job. At that physical, a dangerous murmur was discovered and as the saying goes, the rest is history. Within the last seven years, I have been through three major open heart surgeries, multiple invasive procedures, every heart test imagined and sadly had to accept a life long disease that may never be “fixed.” I am a currently a patient at the Adult Congenital Heart Center which is a joint program between CHOP and Penn Medicine in Philadelphia. My first open heart surgery was in August of 2012 at CHOP. My ASD and cleft in my mitral valve were addressed. Thankfully, everything went well. Two and half years later, I ended up getting severe mitral valve regurgitation and another open heart surgery was necessary. My wonderful surgeon at the time tried to repair my own mitral valve, but ended up needing to do a full replacement. So, on May 27, 2015, my pig valve named Wilbur (yes, I name my valves) saved my life. After that recovery, life seemed to get a little better and hopeful to start becoming more independent. About a year after my second surgery, I still felt pretty awful, especially with exertion. This concern lead to a lot of back and forth conversations among my care team and ultimately more invasive testing.
At this point, my wonderful care team in Philadelphia felt it was best to get a second opinion at Boston Children’s Hospital. Due to finances and being out of state, it was another challenge in this life long disease journey. I eventually made my way to see the team in Boston and my gut feeling that something was not right within my heart was validated big time at that appointment. Medical terms is not my thing so in short, my VSD (which at time of second surgery was not an issue) and current mitral valve would need to be addressed and could only been done through another full blown open heart surgery. My third open heart surgery in a little over 6 years. At this point I felt very defeated, but I knew I had been recommended to the best of the best in the heart world. And frankly, I wasn’t ready to throw in the towel after having already survived two open heart surgeries.
I am now four months post op from my third open heart surgery. I still can’t believe I have had three open hearts in six years. My VSD was patched up and I got a brand new pig valve named Jude. The only medication I am on now is a baby aspirin. My third open heart surgery at Boston Children’s was extremely challenging both physically and mentally, but I could not be grateful to survive and have a better quality of life. My dreams of being a mom or thriving in a career could actually come true. Although, I still have some ways to go physically, my heart health is in a much better position than 6 months ago.
My diagnosis day could not have come at a worse time in someone’s life. In some ways, I have had to grieve my twenties. The years that seem to be what some people call “independent” were for me the exact opposite. Rightfully so, came the fear of missing out on being a young adult an d the independence, adventure and opportunity that comes with it. However, I feel that I have been given this cross for a reason. My blog, www.mimisopenheart.com has been place for me to share my fears, hopes and experiences on how to keep going with a life long disease. The interactions with others in my shoes has been absolutely beautiful and humbling. I have been able to make beautiful memories with my nieces and nephew over the years that if I had had my own family or career, I may have missed out on. I have met incredible and life changing medical professionals. I have cultivated long lasting heart friendships. And most importantly, I have grown so much in my faith and truly believe I am still alive because of the amount of prayers said for me throughout my surgeries. I have truly seen God’s hand through it all.
If you are a late diagnosis like me, I encourage you to connect with local CHD men and women. It is very hard to navigate congenital heart disease alone. A support system with people who have been in your shoes is so important. I have also learned to stop comparing myself to normal people and the timeline I had always planned for my life. Accepting my “normal” has been liberating and allowed me to realize my life is not empty, but more beautiful in a way I would have never seen without my heart defect.
Gratitude is everything.
Choosing to be joyful when life throws you painful curveballs is the secret to living with a chronic illness every single day.
It is my hope that those born with CHD will know their journey as life long patients are always validated and beautiful. Seven years ago, I never would have thought how thankful I am to have congenital heart disease. It has given me a greater perspective on the dignity of life, a platform to help serve others in their own suffering, and the true beauty of bodily scars.
Written February 2019