HCM-ers: Introduce yourself or just say hi

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.

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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?

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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?

Jump to this post

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?

Jump to this post

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.

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Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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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.

Jump to this post

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?

Jump to this post

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?

Jump to this post