HCM-ers: Introduce yourself or just say hi

@mistymopps3 from what I understand, apical variant happens more in East Asians. I am Chinese. Within the Asian population, about 20-25% of all HCMers have the apical variant. Whereas in the US and Europe, only 1-2% of HCMers are apical. I am HOCM with mid ventricular obstruction and an apical aneurysm. This is probably the worst kind of HCM one can have.

It's been corrected 🙂

ty Colleen ^_^

Hi Dave,

Wishing you the best. Hope your surgery improves your life alot. It sure did for me. And you are in great hands.

Dave I hope your surgery went well, and that you get a lot of rest afterwards and get well soon! *hugs*

Thanks to everyone who contributed great questions to today's webinar about HCM with Drs Schaff and Ommen. For anyone who missed it, you can watch it anytime here: http://mayocl.in/2rcdkDO

Hi @dtwgwen @rwhite1919 @stacysco @phileigner @onewholovesrock @jeffjonestn @77dhowell @lazell123 @meprahs4554 @janicepike @cstinecipher and @bluewillowskys great to meet you on the webinar. We invite you to introduce yourself to the group and take part in the discussions here in the HCM group on Connect. Ask questions, offer your experience and knowledge and tell us your story.

Hi, I'm interested in joining this community because my father had a triple bypass with a septal myectomy 5 years ago at the age of 78. His 9 and a half hour surgery was performed at Columbia Presbyterian, where he had an 8 day stay. A year later he underwent an Abdominal Aortic Anyurism Repair, also at Columbia, for a AAA that was discovered a few years prior to his HCM surgery (it had grown to a dangerous size). He's now 83 and in very good health, doing all things he did even 20 years ago. He's always been very active, all his life, follows the Mediterranean diet (he's from Italy). He does have a sweet tooth but never over indulges, just a little bit is fine, and he scrapes the frosting off of birthday cakes "It's too much" (the doctors got a chuckle when they heard that). Unfortunately his brother and a few other male relatives who were also active and in good shape passed away from heart disease, and we often wonder if perhaps they also had HCM. It's so important to get treatment from doctors and hospitals who have great experience with HCM, like those from Mayo Clinic, etc even if you have to travel. If you can't travel, then maybe you can ask your doctor to confer with a doctor from a major hospital? I wish everyone here the best of health and success in their HCM journey.

Hey Margie, thanks for telling the group a bit more about you. Your story about your father and other male relatives reminds me of @cynaburst's story that she shared about her father and uncles in this webinar with Dr. Dearani. You and the others in the group might be interested in watching it.

Physicians, Patients & Rare Diseases on Social Media http://mayocl.in/2fhxwyC
Presented by Dr. Joseph Dearani, Chair of the Division of Cardiovascular Surgery at Mayo Clinic and Cynthia Burstein Waldman, Patient

Hi, I'm Janet, and I was diagnosed with HCM almost 20 years ago after my 18 year old son was diagnosed with it. My mom died young from it and so did her grandfather. I have very little information about my dad's side, but he did have a triple bypass in his 60s. It seems I may have to have a myectomy. My question is this: do they perform myectomies at the Florida Mayo Clinic (I live in Florida), or will I have to go to Minnesota? I have called the Florida clinic and e-mailed them, but haven't received a response or appointment from them yet. But they did e-mail me that Mayo charges 15% above my Medicare which is with BCBS. I've heard that Cleveland Clinic also does HOCM myectomies, but they don't accept my insurance as in-network either. I'm still waiting for a response from them as well. Are Mayo and Cleveland clinics rated equally high for these myectomies?

Both are rated equally high. I know that Surgeons from Mayo would travel to the Mayo in AZ for surgeries, but not sure if they do that for Florida. I think part of the issues is the support staff at these facilities.