1. < Hypertrophic Cardiomyopathy (HCM)

HCM specialist?

Posted by rondar @rondar, Nov 25, 2019

Hello! I had a myectomy and aortic valve replacement at Mayo. I have HCM. I have a wonderful cardiologist in the cardiac valvular clinic but would like to consult with a HCM specialist. Is this unreasonable. Do all the cardiologists work together? I don’t want to insult my valvular Dr. I have children and grandchildren and genetic testing has not been addressed.

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charlieandmary | @charlieandmary | May 23, 2023
In reply to @karukgirl "Charlie, I'm so happy to know you have the Cleveland Clinic in your corner. They too..." + (show)
@karukgirl

Charlie, I'm so happy to know you have the Cleveland Clinic in your corner. They too are world class leaders in HOCM. Praise God for that. I was already praying for you and your family as I sent that first post...and will continue doing so, because that sometimes is the only thing we can do. HCM is such a strange disease. Some have it and do not ever know they do. Some have it and only learn about it because someone else in the family has it. Some have it, only later learning what it really is after being misdiagnosed with something else for a long time. I do not know your son's circumstances, and I will not pry. HCM can be life changing for your grandkids, as knowing they have this could lead to modifying their physical activities depending on the sports they are involved in and according to their doctors advice. SCD (sudden cardiac death) is the "elephant in the room" that we all fear. When I learned that SCD could happen to me, I thought of all the times I had been hiking, ballroom/swing dancing, lifting weights, doing yoga...and it could have happened. But it didn't. I felt very blessed. It sounds like you are a close family and that is so wonderful to hear. You have been through so much already. Is their mother involved too? Do your grandkids understand their condition?

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Mother no. And we are in front of HOCM because they are so young. I think we are in charge. This time. Thank you for your comments

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Debra, Volunteer Mentor | @karukgirl | May 23, 2023
In reply to @charlieandmary "Mother no. And we are in front of HOCM because they are so young. I think..." + (show)
@charlieandmary

Mother no. And we are in front of HOCM because they are so young. I think we are in charge. This time. Thank you for your comments

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Your dedication to your grandkids is inspiring. Stay strong. Come back anytime you need to chat, vent, share.

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Mentor
Debra, Volunteer Mentor | @karukgirl | May 23, 2023
In reply to @charlieandmary "Mother no. And we are in front of HOCM because they are so young. I think..." + (show)
@charlieandmary

Mother no. And we are in front of HOCM because they are so young. I think we are in charge. This time. Thank you for your comments

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I thought about your situation some more on my walk today @charlieandmary, it hit me as I was walking up the steepest hill on the trail...your grandkids lost their dad, and their mother is not in the picture. So they have really suffered two losses. Then I thought about what a wonderful blessing for them that you are their protector, their comforter, their shelter and their guide. You never know what people are going through when you interact with them in real life. At the grocery store, gas station, church, bowling alley, wherever...it is always good to give a little extra kindness to strangers because we just do not know the trials they currently face. I pray you have a strong support system too, Charlie, because your burden is so great, and you have suffered a terrible loss and complete change of lifestyle too. I hope you come back and share how you're doing. I am here if either of you feels like sharing.

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swiendels | @swiendels | May 24, 2023

Hello everyone! Has anyone had an alcohol myectomy? Do you still have to take some meds?
I had this type of ablation, take meds and have an ICD as well. Should be well protected but would love to be out of meds

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