The story so far

February 20, 2007

On Thursday, June 12, 2003, a cardiologist in San Francisco moved an ultrasound wand over my chest and said, “Huh. That’s interesting.”

In my experiences with the medical establishment over recent years, I’ve learned a few things. The most important is that you don’t want to be interesting to a doctor.

In this case, the interesting discovery was a dilated aortic root. As you might know, the aorta is the body’s primary artery – the main channel for carrying oxygenated blood away from the heart towards the rest of the body. The aorta begins at the heart’s left ventricle (the largest and strongest of the heart’s four chambers) at a junction known as the aortic valve. This valve, like the heart’s several other valves, contains “leaflets” which open in one direction and close in the other, preventing blood from flowing the wrong way.

The base of the aorta, surrounding and supporting the aortic valve, is called the root. Everyone’s aortic root has a natural bulge. In my case, my cardiologist was surprised to see that the bulge looked bigger than it should be. It was expanded, or dilated, over a short distance just above the heart.

With each heartbeat, the aorta is subject to mechanical stress as blood surges out of the heart. A dilated root is evidence that the wall of the artery could be weakening. If left untreated, a weakening vessel wall can eventually tear or its several layers separate, a condition known as dissection. Aortic dissection is an emergency: a life-threatening medical condition from which people die.

This was troubling news, to say the least, but my doctor at the time suggested that my aortic root was not something of immediate concern. Yes, I should avoid anything that dramatically raised my blood pressure, which increases strain on the artery. Luckily I had long before given up my dream of becoming a professional weight-lifter (hah), so there would be little or no effect on my daily life. Although my doctor did mention the possibility of surgery, it sounded like it was decades away at earliest. I left his office a little shaken but entirely optimistic.

Nine months later, on March 31, 2004, life changed. I was talking to Dr. David Liang, the lead cardiologist at the Stanford University Medical Center Cardiology Clinic. I had come to Stanford to be evaluated for Marfan Syndrome, a connective tissue disorder with several distinguishing characteristics, including aortic dilation. After reading about the condition and discussing it with my primary doctor, it seemed a good idea to consult with the experts. Stanford hosts one of the only cross-disciplinary Marfan clinics in the country, and was conveniently close to my home in San Francisco. A Marfan diagnosis could actually be helpful, because a fair amount is known about the disease.

In the intervening months, I had been diagnosed and then successfully treated for papillary thyroid cancer. This involved both surgery (full removal of my thyroid gland) and treatment with radioactive iodine. As bad as it sounds, there’s an adage in the medical world: if you’ve got to have cancer, make it thyroid cancer. The surgery was relatively easy and the iodine treatment, unlike the radiation used to treat other types of tumors, is painless and without side-effects. Even better, the survival rate for most types of thyroid cancer is excellent – my life expectancy barely experienced a blip, statistically speaking.

These events occurred near the end of 2003, and by the following spring I walked around the city feeling like a normal person again. My expectations of my upcoming visit to Stanford were sanguine: either I had Marfan Syndrome or I didn’t, and either way I would understand my situation better than before. I felt prepared for any possible outcome.

So when Dr. Liang, young and energetic, strode into the exam room and announced that I didn’t have Marfan Syndrome, I met the news with a relaxed interest. Alas, the gods have a twisted sense of humor. He immediately followed up by informing me that my aorta needed to be fixed, soon, within a few years at the most, and the treatment was open-heart surgery. I was stunned.

Looking back on that day from a distance of nearly three years, it’s hard to recall the exact series of emotions I experienced. I do remember coming home and telling Debbie, my girlfriend-and-partner. I gave her the news calmly and she listened calmly. We began considering the shape of our new and unexpected future. I was 34.

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