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Debra, Volunteer Mentor avatar

What I Learned From My Open Heart Surgery

Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 16 11:41am | Replies (104)
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Profile picture for Debra, Volunteer Mentor @karukgirl

Hi @lesterholland,
Were you able to learn any information from the links that @colleenyoung provided?
It must be frustrating to hear the same thing twice. May I ask if your second opinion was from a Center of Excellence (COE) like Mayo Clinic, Cleveland Clinic, or Cedar-Sinai? Or another COE?
I ended up having four total cardiologists input.
My local (who missed my diagnosis totally)
An outside Dr affiliated with the hospital I worked for and 5 hours from home
Cedar-Sinai in CA
Mayo Clinic in MN
I just mention this to let you know that sometimes we have to be persistent and push for more.
You have done your own research, which is great, but now what do you do with it?
Keep going! Did you contact the Mayo? Or have you seen a Dr at a COE?

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Replies to "Hi @lesterholland, Were you able to learn any information from the links that @colleenyoung provided? It..."
lesterholland | @lesterholland | Jul 17 7:24pm

Karuk,
Thanks for your interest and your comments. I've come to understand that while the heart is supremely important to our living, it is really a fairly simple pump that has been the subject of intense and long study by brilliant minds. Peripheral improvments like the Watchman and pacemakers and stents and targeted medications will continue to improve the functions of our hearts and thereby improve and lengthen our lives. My uneducated opinion is that the next great breakthrough will be a chemical that will dissolve the plaque now resident in my arteries. It is a race, and I'm hoping to stay in it until the good guys win.

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lesterholland | @lesterholland | Jul 17 8:49pm

Thanks......the first rerport was from Universty Hospital in Cleveland. Second opinion was from Cleveland Clinic. Third was from a youngish (perhaps 53) Cardiologist in Cincinnati. All three agree that of current available options, medical treatment of symptoms is the best option. One mentioned that if I reach desperation, I might look into a procedure called CHIP, NOT recommended at this point.

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