Hello! I’m Kristen from NJ and I am a BAV patient. I was diagnosed originally 9 years ago at the age of 22. I had been experiencing some chest pain during a stressful time in life so I was referred to cardiology who then did an echo and discovered my valve. I was pretty concerned, it was all new to me but my cardiologist at the time didn’t seem too worried about anything. I was told to follow up yearly with an echo and sent back off into the world.
I decided to obtain a second opinion so I followed up with a congenital heart specialist out of NY Presbyterian, Dr.Sommer, and he explained the condition in detail but seemed fairly confident I wouldn’t experience any major complications and if I did see any backlash from BAV, I would be well into my 50’s before then. Well. Life doesn’t ever follow our script now does it?
I followed up every year like told for the next 3 years. Each time seemed less eventful than the last. My diagnosing cardiologist left the practice after my first year follow up so I was now seeing her replacement. Once he took over I was then being told “possible BAV” meanwhile prior it was a clear diagnosis. He seemed even less concerned than my original MD. At this point I was 25, headed into radiology school and paid no mind to my “definitely maybe” bicuspid aortic valve. I stopped following up. If they weren’t concerned, why should I be, right?
Fast forward to modern day and I’m 31 going back to my cardiologist for work clearance for my new employer. She,Cardiologist #3 within the same practice, actually showed concern. She was the first dr to talk about beta blockers with me and explain that in a patient with a normal heart, my BP and HR were good, but in a BAV patient they were a bit too high and that I needed to start meds right away to lessen stress on the valve and the heart. Echo was completed and I’m told “Let me see if the dr can discuss the scan with you right now before you leave.” Well. I work in the field of radiology and I know exactly what that means. A 4 cm ascending aortic aneurysm was what was found. Stunned, I took my diagnosis and my scripts for CTA and abdominal US and went home.
I spent the weekend paralyzed with fear and feeling completely overwhelmed. I spent so many years not thinking anything of my definitely maybe BAV. It wasn’t a big deal, the last time I followed up 6 years ago, the doctor wasn’t even fully convinced I had BAV! So what the (fill in your favorite explicitive/sentence enhancer here)?! And there I was. Mad at my previous providers and more so, mad at myself for not being my own advocate sooner. Could I have prevented this? I felt so guilty. Dejected and let down, I searched out information and support and found myself here. Thanks google.
My “story” is still very much in the works. This all happened just 6 days ago (5/18/2018) Talk about an emotional whirlwind. But, if my experience, if my story can help out just one person, if it can show just one person that you have to be your own advocate then I’ll be content with that.
Here’s to finding comfort and healing in supporting others. 💕