If you'll indulge me, today I'd like to get something off my chest. It's been one year since I came home from the second of two procedures involving repair of an aneurysm in my aorta, the main artery of the body. I've openly talked about the surgery, but until now I've held the details close to the vest.
I'm ready to share the whole story about three surprising diagnoses, the miraculous surgery that likely saved my life, and some facts about aortic disease that everyone should know. Perhaps selfishly, sharing my personal journey is a means of catharsis. But - most importantly - I'm compelled to open up and exercise a little vulnerability for the chance that a life could be saved.
The First Big Finding
In 2022 at age 47, I took it upon myself to get a coronary calcium scan to check for build up in my arteries after a friend’s life was saved by this simple, inexpensive test. The results showed high probability of arterial blockage, so I went to a cardiologist for the first time.
During a standard stress echocardiogram, in addition to some minor calcification in my arteries it was discovered that my aortic root was enlarged. Imagine the aorta as a large candy cane-shaped vessel running from the top of the heart down through the center of the body. The root is the start of the top bend that connects to the heart's left ventricle.
The nurse doing the testing was alarmed by the finding, but the doctor wasn't overly concerned. I was prescribed a statin for lipids and started an annual routine of scans to monitor the size of the aortic bulge. The absence of any mention of the scary word "aneurysm" combined with the nonchalance of the cardiologist left me with little concern.
A Shocking Diagnosis
Being a health-conscious person, I diligently followed doctor's orders and repeated CT and echo scanning for the next two years. Each time I was advised that the size of my aortic root had changed every so slightly, but there was no need to take any action or further precautions.
In early August 2024, I received a somewhat cryptic outreach from Vanderbilt's cardiac surgery team asking to meet regarding my aortic condition. Thinking this was simply a matter of additional monitoring or study, I gladly took the appointment and on August 28th Amy and I found ourselves in an exam room with a congenial, but very serious, cardiothoracic surgeon.
We were informed that I had an aortic root aneurysm which, if left uncorrected, could very likely dissect (tear apart) and kill me within minutes. As the room began to spin and the blood drained from my face, the doctor urged me to undergo open heart surgery to repair the aneurysm as soon as possible. In that moment, my self-identity shifted from that of a healthy middle aged man to a guy walking around with a ticking time bomb in his chest.
As I would later discover, my cardiologist was unaware of recent scientific studies and changes in recommendations for aortic root repair. Because my annual scans were recorded in Vanderbilt’s medical records system, an aortic health specialist had discovered the size of my aneurysm and alerted the cardiologist to refer me to a surgeon. (Whoever you are, wherever you are, I am eternally grateful to you.)
Two More Revelations
Having quickly accepted my fate, Amy and I jumped into preparation mode. The surgery was scheduled for January following a family Christmas vacation to Italy that the doctors cautiously approved me keeping. To reduce the risk of dissection of the aorta, I was ordered to minimize lifting or straining and was prescribed medications to lower blood pressure.
Because there are a handful of rare genetic conditions that can cause aortic disease, I underwent genetic testing. To the surprise of the geneticist and the cardiology team, my results came back positive for Marfan Syndrome, a rare genetic mutation that affects connective tissues and - among many other things - can weaken the aorta. Marfan is normally an inherited disorder, but I have no known family history. It is presumed that I developed a spontaneous mutation. Lucky me.
As an additional precaution, I had a heart catheterization the week prior to surgery to check for any additional issues. Lo and behold, one of my main arteries (aka the "widow maker") was 80% blocked. Despite all the prior scans of my vascular system, this risk had been lurking undetected. Ticking time bomb, indeed!
Lucky to Be Alive
On January 15, 2025, I had a successful Valve Sparing Aortic Root Replacement (named the "David Procedure" for the surgeon who conceived it). This relatively new and complex open heart surgery replaced a section of the aorta with a graft while allowing surgeons to save my natural aortic valve. A coronary bypass to fix the clogged artery was performed at the same time. Thanks to a strong, healthy body (farm fitness!) and great care by the hospital staff, I was discharged only four days later. Unfortunately, that wasn't quite the end of the saga. I'll spare you the details, but three weeks later I ended up back in the hospital for a heart ablation to correct recurring arrhythmias brought on by the trauma to my heart muscle.
The recovery journey has been physically arduous and emotionally exhausting. A year later I am fully recovered from surgery and every waking morning feels like a precious new gift. The Marfan Syndrome diagnosis is life changing and adds a layer of uncertainty about the future, but I have a team of world-class specialists looking after me.
I remain in awe of the medical staff and the advanced technologies that saved my life. But I'm unspeakably grateful for my darling wife, whose loving care nourished my body and soul through the entire ordeal. I'm convinced that her burden was magnitudes greater than my own.
A Call To Action
Prior to my diagnoses, I had never heard of Marfan Syndrome and can't recall ever giving a passing thought to the possibility of an aortic dissection. I was a health-conscious, physically active, middle-aged guy oblivious to the risk. As it turns out, there are many people in the same boat.
According to the John Ritter Foundation for Aortic Health (yes, that John Ritter of Three's Company fame), 20,000 people suffer an aortic dissection in the US each year and half of them do not survive. Aortic dissections often present symptoms that are misdiagnosed as heart attacks, but the life saving treatment could not be any different.
I highly encourage everyone to visit the education section of the Ritter Foundation's website to learn about aortic dissection, especially the risk factors and symptoms. If you have a family history of aortic aneurysm/dissection, Marfan Syndrome, or any other genetic risk factors, I urge you to seek the counsel of a physician and to advocate for any screening or testing you may need. Please feel free to forward my story to anyone who may benefit from reading it. And, as always, thank you to this community for your love, support and encouragement!
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Resources:
The John Ritter Foundation for Aortic Health