So, here’s the story: about 6 years ago I lived in North Carolina. I had seen this cardiologist for about 10 years at that point and I absolutely worshiped him. He took good care of me, and, to my knowledge, he took good care of my heart. He did all the right tests, kept me on the right meds, sent me to a doctor in pharmacy to manage my nutrition and drug regimen, the works.
But he never ever said once (after doing an echo of my heart almost every year) that I had a bicuspid aortic valve (which should be there since you were born).
About 6 years ago, I moved to Utah. I had to get a new cardiologist. About the second year I saw him, he said for sure I have a bicuspid aortic valve that is shrinking and at some point I’d need surgery. I started doubting my long time worshiped North Carolina cardiologist, because how in the world did he ever not see my congenitally modified and bad valve?! He did tell me about the heart murmur, and bruits in my carotid arteries, but never about this anomaly of my valve. Why?! How could he miss it for 10 years?! He went to Harvard, for crying out loud?!
In the past 6 years, my so called bicuspid aortic valve continued to get bad, until this year, when you know what happened (http://livingwithfh.blogspot.com/2015/12/and-now-we-wait.html).
Fast forward a few months later, till yesterday when I met with my heart surgeon, after a month from surgery.
My pushy and annoying curiosity kept asking the surgeon very specific questions about my surgery - just tactical, specific ones. So, he finally printed my entire operative report and gave it to me, to easily answer my morbid curiosity.
And to my huge surprise, it’s written quite clearly all over it that what the surgeon replaced inside my heart was a “tricuspid aortic valve with two leaflets joined together with severe calcification”. He writes there how only one leaflet was working, and the other two were glued together and immobile.
So many things and questions came through my head:
First off, my North Carolina doc was not wrong - probably, at that time, my valve was visible as a tricuspid valve (which is normal), so no reason to alert me of anything
Then, how can so many echos done here in Utah, for 5 years now been wrong? They did MRIs and CT scans and even an angiogram. Not ONE of them could show the difference between a bicuspid valve and a atherosclerotic tricuspid one?
How can these very advanced tests that we trust so much not be able to tell the difference?
Well they didn’t.
Sure, the final outcome was good - we got the valve repaired (regardless of the reason of how we got there), along with everything else, but the final diagnosis was just: CAD caused by FH. All the damage, whether in my valve, my aorta, or three of the coronary arteries were all caused by what I knew since I was 6 that it’s killing me slowly: cholesterol.
You know, almost 35 years after being diagnosed with FH, there is not one year without surprises in this disease. Either good ones, or bad - they’re all there. You’re always on your toes and always learning something new about your body.
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