Hi – my husband was diagnosed at 67 with HOCM. He has always been an active, healthy fit person but out on our property one day, he felt pressure in his chest going into his arms. Never one to go to the doctor, except for the occasional cold or bug, it turned out he had a serious problem. Initial testing was done pretty quickly with a referral to Mayo here in Phoenix. Alarmingly, the referral was to the heart transplant department. More tests and a seemingly long wait resulted in the decision that he was not a candidate for a transplant at this time. There was obvious concern about his lack of ongoing medical care over the years. After the implanting of an ICD, he was referred to Mayo in Rochester for a septal myectomy, which he had June 2016. This was 6 months after initial diagnosis. Even though we live within 60 miles of Mayo here in the Phoenix area, they do not do this surgery here. Mayo recognizes this surgery must be done by very experienced doctors. I can’t encourage you enough to go to Mayo if you eventually need surgery.
My husband’s surgery went very well. I will be honest and include that he did have complications that turned a 5 day hospitalization into 12 but those complications were unique to his situation so it is important to recognize that this doesn’t happen to everyone and is not the norm. He has now fully recovered and is doing very well. He will always have his ICD because he has arrhythmia issues but other than that, he says he feels so much better and feels 20 years younger. I have no doubt he was having problems long before he recognized he might be having heart issues.
HCM has a strong genetic component. His father died suddenly at 67, his grandfather at 61. Because no autopsies were done, the deaths were reported as “heart attack”. While we will never know, they both likely died of sudden cardiac death, which is one of the risks of HCM. I share this because it is important for children and siblings to be checked for HCM when someone is diagnosed with it. I encourage you to continue to follow up with your doctor and talk to family members about being checked out too. Best wishes for the future.