Daily Archives: November 23, 2005

Took Allie to the cardiologist today

Her aorta’s 1.9 cm, up from 1.8 in May. Her mitral valve is leaking–wasn’t even prolapsing before (mine always prolapsed without a leak, until a couple years after my aortic root replacement). I actually pointed it out–I’ve seen enough echoes to know what MVP looks like.
She still has the “minor” leak in her tricuspid valve.

The doctors in her practice are pediatric cardiologists, and Marfan is one of their specialties. We were fortunate to have them open an office in Fredericksburg.
In May, the doctor asked me to critique their page on Marfan syndrome.

The doctor asked who my cardiologist was. I told him. He asked if I’d like to start seeing him. I said, “But you’re pediatric.”
He said (not an exact quote, but the gist), “Yes, but I specialize in Marfan syndrome. I see a Marfan, I get excited. Don’t send me some 40-year-old with myocardial infarction, but if I see someone with a congenital defect, I want to see them; I don’t care how old. I’ve treated a Marfan in his 50s before. You don’t just need a cardiologist, you need a Marfan specialist. Besides, I think it’s better to have a whole family treated by the same doctor.”
So I said sure. I was just surprised. Usually, I hear stories of Marfs being treated by pediatric cardiologists up until they hit their 20s, then the pediatric doctors insist they see someone else, and they have a hard time finding a competent cardiologist. So I was glad to have the reverse happen in my case.

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