About Me (In My Own Words)
Hi! I’m Mary. I’m 25-years-old. The story that I’ve been told goes that I was born with a “hole” in my valve, which was causing leakage. The doctor hoped it would heal itself, however I ended up having open heart surgery when I was 18 months old. It was a VSD (ventricular septal defect) repair. When they did the surgery, they told my parents there would be a chance I would need another surgery, as they left very small leakage with hopes I might grow into it.
From that day on I maintained my relationship with my pediatric cardiologist and saw him every 6 months to a year for my routine check ups. I never had any restrictions other than coffee, tea, caffeine. I met with my doctor all the way up until I was 18. Needless to say it was probably one of my toughest break ups! Then I left for college.
Fast forward a few years, after a few attempts of establishing relationships with new local adult cardiologists, I finally found a doctor I felt comfortable with. He even took the time to draw and explain how the heart works that way I knew exactly what was going on in my body— for all of my life I was piecing together and storytelling everything I’d been told.
Anyways, my doctor ordered an echocardiogram and an MRI in order to better understand what he was working with. The first time he listened to my heart, he informed me I had two murmurs— I always thought I only had one, and so did my mom.
After reviewing the results of the tests, my doctor diagnosed me with severe aortic valve insufficiency and explained this is due to regurgitation. He explained that my heart was working overtime and as a result, was growing in size to make up the necessary space. Ultimately he referred me to a surgeon to get this either repaired or replaced.
Since this appointment, I have connected with a local cardiac surgeon, a congenital heart specialist, and a congenital heart specialized surgeon. Based on my age and desire to have a family eventually, the Ross Procedure has been the recommended route. The specialist also recommended this be done in the next year, but I would like to get it done ASAP.
I have been dealing with a lot of emotions over the past few weeks. I have never had any symptoms, or so I thought at least? I can’t help but wonder if I’ve actually been experiencing symptoms but don’t know any better because this has been my life.
If anyone has any similar stories, please feel free to share. I feel somewhat alone in this, though I recognize the amount of resilience and strength of other individuals in this group who has or is going through something similar! Thanks for reading my story, looking forward to continuing to be a member of this group! Xo
12/27/22 Update: Last week I went for an echo-stress test. Later that day my ACH specialist called me informing me she had submitted all necessary paperwork for authorization from my insurance company. I am fingers crossed this process is quick, with minimal challenge so we can proceed with scheduling my surgery. 🤞🏼
More Info About Me & My Heart
More About Me
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I am from:
New Jersey
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I was diagnosed with:
Aortic Regurgitation
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My surgery was:
Ross Procedure
