I was diagnosed about 12 years ago at 42 years old. Active male, no symptoms. Was in for a checkup and my doctor heard a murmur for the first time, 1 week later get the HCM news. 25mm with obstruction, put on beta blockers and told not to play basketball any more. It was shocking to say the least, but as we all know, it can always be worse. MRI screening has shown that I have 16-20% patchy scarring in septum, so I am in a gray area as to whether I should have an ICD placement. Mayo Doctors estimate 2% chance of 5 year SCD event, so that's what I live with every day. If getting an ICD was like wearing a seatbelt, I'd be all in, but its has drawbacks and risks too, so I have decided for now to not have an ICD implanted. It's funny when you talk to people they say that 2% sounds like pretty good odds. When you see 2% mortality rate due to COVID-19, we have mass hysteria, when the shoe is on the other foot I guess. Oddly, I don't look, act or feel any different than I have my whole life, just have that thought about dying once in a while, happens at odd times.

I am going on a ski and hiking trip to Utah with my son next week, so, like I said I feel fortunate in many ways. I have 2 sons, one is 23, one is 20, neither have shown any abnormalities yet, I did undergo genetic testing late in 2019, I tested positive for genetic cause for my HCM. My sons have decided to undergo the genetic testing, praying they are negative and can discontinue screening. I think their well-being has always been more frightening for me than my own condition. To me, the hardest thing about this disease is knowing it will not get better, you are just hoping it won't get worse. Get to know your care team, including the people giving you your tests, educate yourself, follow your doctor's plan for you. Guessing everybody has some weird triggers, the only time I have any symptoms is after lunch, oddly, it doesn't matter what I eat, salad, protein, carbs all the same, I get a little winded at that time, so I just know what to expect and plan accordingly. BTW, MyoKardia is working on drug therapies for HCM that has shown some promise for actually improving heart function, check it out at: https://myokardia.com/