The concept of control

I learned when Jenn was ill several years ago that it's impossible to control the flow of news about illness. This train has left the station, so to speak: despite seriously incomplete information (like does my surgeon of choice actually agree that I need surgery, and when should/can it be done), just about all my family and family friends know the situation.

This is fine. It's just that I've had to master the quick, succinct explanation sooner than I'd otherwise have, because it's always the first topic of conversation. It helps to know your subject inside and out (I do) and to be able to articulate it differently depending on your audience. For example, most of my non-medical-professional friends get the simple explanation that blood flow out of the heart is obstructed because of extra tissue growth, and as a result I get light-headed and short of breath with exercise. With others, like my cousin Dan (an internist) and my close colleague Jonathan (a developmental pediatrician) I can throw around terms like "echocardiographic evidence of a left ventricular outflow obstruction with associated gradient across the aortic valve, with increased severity on Valsava or exercise and associated hypotensive exercise response."

Everyone's been quite supportive, with plenty of well-meaning suggestions and advice - most redundant or incorrect - but supportive nonetheless. Having done my homework really helps in fielding questions and input from people. And ironically, having already been through serious illness in the family makes this go-round a lot easier when it comes to "controlling" the process. At some point I eventually learned that just because you can't control the news flow and the permanently changed interactions with family, that doesn't mean you've lost control of the choices you make to manage what you need to manage. It's about managing those choices when they come to you; everything else takes a backseat.

I'll get to the "elevator speech" itself in a future post (probably in the form of an FAQ), but if you're dying to know more about HCM, click here. Brigham and Women's Hospital in Boston is where I get my key care for HCM, and it's a designated HCM center of excellence. If you have the time, watch the videos from the 2008 HCM workshop at the bottom of the page. Dr. Carolyn Ho is my HCM cardiologist, and in the parlance of patient advocacy, she's a "rock star."

Take care,

Michael