About Me (In My Own Words)
I was diagnosed with a bicuspid Aortic value in February 2012 after suffering a stroke at age 40. Unfortunately, my family doctor decided to keep this information to herself and did absolutely no follow up. In January 2016, I began to see a rheumatologist after being diagnosed with psoriatic arthritis. Every time I would visit my rheumatologist, usually every 3-4 months, he would mention a heart murmur. My family doctor never said a thing about a murmur.
In January 2020, I was at my visit with my rheumatologist and he once again mentioned my murmur. I finally got up the courage to say "why do you keep mentioning this murmur?" He told me to have my family doctor check it out. In February 2020, I had my six month visit with my family doctor. Toward the end of the visit, I mentioned my rheumatologist wanting her to check my murmur out. She rolled her eyes, walked over to me while saying "it's nothing. We can do an ultrasound, but that's more money you are going to have to pay out of your pocket. We can check to see if your Methotrexate has done any damage to your heart." She proceeded to listen to my heart and said nothing. I also mention at this visit how I didn't have energy any more and had seen a decrease in energy the past two years.
Two weeks later, I was having my heart ultrasound. At the ultrasound, I had the same tech who performed my ultrasound in 2012. He mentioned he had found my BAV when he scanned me eight years earlier. During my hour long scan, I realized something was wrong.
Three days later, I was sitting in a cardiologist's office hearing about how I would be having a heart cath and open heart surgery in the future. The scan from 2012 showed no stenosis and I was now at the severe level. Why me? I met with my heart surgeon in mid March. I asked him directly "would I have died if I had not asked my rheumatologist about the murmur or listened to my family doctor and not worried about it." His answer was "Yes!" My heart cath was scheduled for March 30th. Due to Covid 19, it was postponed until May 11th. My cath showed no blockages at all. My open heart surgery is scheduled for June 16th.
I have found a new primary care provider per the advice of my cardiologist and heart surgeon. I've never heard anything directly from my family doctor who ignored my systems and diagnosis. Upon obtaining my clinic notes, I learned she noted "no murmur" in August 2019. From my February 2020 visit, she noted "murmur is louder. Diagnosed with bicuspid Aortic Valve in 2012. Will do ultrasound to check condition." This sure isn't what she told me! I'm devastated and found several other errors in my clinic notes.
I'm on my way to getting better. I'm scared. I cry at least once every day. I'm furious at the way I've been treated by my family doctor and will be taking action when everything is over and done. I'm angry because this is happening to me!
This is my story! Stay tuned!
More Info About Me & My Heart
More About Me
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I am from:
Fountaintown, IN
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My surgery date is:
June 16, 2020
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I was diagnosed with:
Aortic Stenosis
Bicuspid Aortic Valve
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My surgery was:
Aortic Valve Replacement
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My surgeon is:
Dr. Scott Hanan
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My hospital is:
St. Vincent Heart Hospital
