ironically, what I do for a living is to manage a patient to patient mentoring program for diabetes patients. It is funded by a large pharmaceutical company. THat has nothing to do with finding you…except to say that I was ecstatic when I saw your website. There do not seem to be many resources for cardiac patients. My 11 year old son had a subaortic memrane removed when he was 5. He has had no changes to his regurgitation or left chamber size ever since. I’ve been trying to find my way through online clinical data but having a tough time — Last week, his annual check up indicated a change in his left chamber size and he was put on blood pressure medicine to thin his blood so it goes through the aortic valve easier. From what I can tell in the online info., most patients are OK after surgery with little or no changes – my son is now in the 12.5% of patients who not. I am desperately trying to delve through any data I can find, figure out the likelihood of further change, and time to what is probably going to mean a Ross procedure. You are amazing for what you have accomplished. I can’t wait to get your book! Thank you for reaching out to others to offer help!