About Me (In My Own Words)
I received a dignosis 2 1/2 years ago of ascending aortic aneurysm, and have been under intensive surveillance for my ascending aortic aneurysm at Weill Cornell in NYC. Ive learned that when it comes to all things aortic aneurysm, its best to be treated and managed by doctors in an aortic center of excellence. It makes common sense that doctors who specialize in aortic disease or work at hospitals that have a high volume of aortic cases are more experienced in everything from the imaging of aortas down to the latest medical and surgical treatments. .
My aneurysm was detected at 4.2 cm by echo, and because I was at Weill Cornell - one of the top aortic centers in the world - I had specialists who treat over a thousand patients a year with aortic disease. I have been under the care of one the top cardiothoracic surgeons in the world - Dr. Leonard Girardi who is Chief of Cardiothoracic Surgery at Weill Cornell. They perform over 300 ascending aortic aneurysm open repairs a year. He is on the cutting edge of the latest research on the medical and surgical management of the disease.
My aneurysm had eventually grown from 4.2 in 2016 to 4.6 cm in 2018, and Dr. Girardi decided to operate on me as I had a family history of aortic aneurysm and sudden cardiac death. I underwent genetic testing for FTAAD in May 2017 and was diagnosed with a genetic variation of unknown significan of the COL3A1 gene - which is known to cause forms of vascular Ehlers-Danlos Syndrome. The finding of unknown significance was mainly due to the fact that I am the only patient at this time to have been registered for this particular variant and there is very little known about my variant to make a determination of its pathogenicity. Dr. Girardi was suspicious it is pathogenic for connective tissue disorder. And because of family history and other factors, we felt the risk of early dissection or rupture was elevated.
Another factor was that aside from my aneurysm, I had not yet experienced any deterioration of my aortic valve and could thus preserve my valve using a David procedure. The ability to preserve the valve before matters get worse is a strong marker for intervention to avoid post-surgical complications and co-morbidities. And better long-term longevity and quality of life. Dr. Girardi has been performing thousands of valve-sparing open repairs of the ascending aorta over the past 15 years with a 0% mortality rate 30-day post-surgery. Yes, thats ZERO!
i underwent surgery at Weill Cornell just a little over a week ago on August 7, 2018. Surgery was a complete success, I am now on the slow but steady road to recovery. And I am thankful that I’ve been under the care of doctors and surgeons who understand this disease and are pioneering the evolution on how we diagnose and treat this disease. Many of the assumptions around aortic aneurysms are being rethought through ground-breaking research they perform. What was considered the gospel just 5-10 years ago about aneurysms is being revised, and I expect new updates to the guidelines on risk factors, causes, and methods to determine earlier intervention for surgery and risk stratification. In fact, I am currently a research subject on two separate clinical research projects on aortic aneurysms at Weill Cornell. Paying it forward to help the cause.
I hope my story and thoughts will help you as you decide your plan forward.
More Info About Me & My Heart
More About Me
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I am from:
New York
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My surgery date is:
August 7, 2018
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I was diagnosed with:
Aortic Aneurysm
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My surgery was:
Aortic Aneurysm Replacement
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My hospital is:
NY Presbyterian/Weill Cornell