My story, like so many others, starts with a heart murmur. My mom took me to a cardiologist at Emory University when I was two and he said everything looked fine and questioned why I was even there. Since then, I’ve always said that I had an innocent heart murmur. However, I think I knew something was off. I can remember not being able to keep up with my peers during sports activities. Looking back, it all makes sense.
Fast forward to 2012 (age 26), I gave birth to my wonderful son, Jacob. After delivery, I swelled more than usual (30 pounds came off in the first week) and I remember having trouble breathing. Eventually the symptoms went away and I resumed life...as much as you can with an infant. Sometime later, I went to the urgent care for a cold and the doctor asked about my murmur. I replied that it was “innocent,” and he replied “well I always recommend following up with a cardiologist because things can change.” Since doctors usually never heard my murmur, this was yet another red flag that I chose to ignore.
In 2014 (age 28), I was pregnant with our daughter and just knew that something was wrong. I referred myself to a local cardiologist and after listening to my heart, he said you definitely have a murmur but I don’t think it’s going to be life-altering. Well, one echocardiogram later, the life-altering news was revealed: a subaortic membrane and severe mitral regurgitation. I was scared. The rest of my pregnancy was one full of anxiety as I constantly wondered what would happen after I delivered my sweet girl. The prospect of surgery after just having a newborn was daunting. I proceeded to turn that anxious mind of mine into investigative mode and referred myself to an adult congenital heart specialist at Emory University. I found out that I do not have a subaortic membrane, but instead a bicuspid aortic valve with moderate stenosis, severely leaking mitral valve, a severely enlarged heart and a reduced ejection fraction of 40-45%. My world felt as if it was crumbling until the day my daughter was born and I cried out tears of joy. She was the symbol of hope that I so desperately needed. 6 weeks following her delivery, I was prescribed a portable cardiac defibrillator and I wore this for 3 months (my EF had dropped to 35%). My heart recovered a bit so I didn't have to wear it for long.
Currently (my youngest is one and a half), my bicuspid aortic valve is moderately stenotic, mitral valve is leaking severely, heart is enlarged with a mildly reduced EF. I also have over 20,000 PVCs a day. For the last year and a half, they have given my heart a chance to recover on its own from pregnancy and shrink to hopefully avoid surgery on my mitral valve; however, I’ve been stable and not moving in either direction. My cardiologist told me I would know when it was time for surgery. Although, I feel well, I’m ready to feel better than ever before. Reading the stories on here have given me peace; mentally, I know it is time.
To say it's been easy would be a lie, I'm so incredibly anxious. However, it’s time to place my faith in the surgeons and the doctors and the One above. I believe that I will come out stronger than before and will have a long life with my family.
I’m currently in Atlanta. After much consideration, I’ve reached out to Dr. Gillinov and his team at Cleveland Clinic to perform an aortic valve replacement and a mitral valve repair. A surgery date is on the horizon. Would love prayers, words of encouragement, stories of hope, thoughts on Dr.Gillinov and Cleveland Clinic, and a conversation with people that understand.
From one heart warrior to another…thank you for sharing your journeys.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26 NIV)
More Info About Me & My Heart
More About Me
I am from:
I was diagnosed with:
Bicuspid Aortic Valve
My surgery was:
Aortic Valve Replacement
Mitral Valve Repair