HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect – a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

@kanaazpereira

Welcome to Connect, @bbonchek.

I truly admire the fact that you are being so proactive about your health. Mayo Clinic has a long-standing hypertrophic cardiomyopathy program that provides highly individualized care. If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

While we wait for other members to weigh in, I'd like to introduce you to @cynaburst, whose surgeon was Dr. Dearani, Chair of Cardiovascular Surgery at Mayo Clinic. She wrote these notes from a presentation he gave last year:
– Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/
You can read more testimonials from Mayo patients in this discussion, and how the travel was not the barrier to excellent care https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/

I’d also like to invite @ronaldpetrovich @mbcube @ccubed @rrowner2 @positivity @priscilla1972 @knecht @janicepike @PatMattos @ninimurphy @melthomas and others to join me in welcoming you. May I ask if you would share more about the diet and lifestyle changes you’ve had to make, @bbonchek?

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Sending this link too from @cynaburst post which details recovery and some background
https://hcmbeat.com/tag/ron-petrovich/

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@dp52350

Tom, did you have your surgery at the Mayo Clinic?

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No It was done in Arkansas in Hot Springs

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hi -I'm Phyllis, just an 87 year old curious about your site. Not quite sure I want to be involved, just exploring.

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Was just wondering how long it takes Mayo Clinic to get back to you to set appointment after my doctor forwarded all my info to them. It will be 2 weeks tomorrow.

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@reenj62

Was just wondering how long it takes Mayo Clinic to get back to you to set appointment after my doctor forwarded all my info to them. It will be 2 weeks tomorrow.

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I also wondered because my husband waited 4 weeks but looking at the schedule we received I realized why. Numerous appointment scheduled over 4 days when they are dealing with 4 different departments and several hundred more patients it all made sense. So don’t give up, everything will work out well with appointments for you

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@rrowner2

I also wondered because my husband waited 4 weeks but looking at the schedule we received I realized why. Numerous appointment scheduled over 4 days when they are dealing with 4 different departments and several hundred more patients it all made sense. So don’t give up, everything will work out well with appointments for you

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Thank you rrowner2. That makes sense! I will just continue to wait.

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Thanks so much for sharing your insights, @rrowner2

Hi @reenj62,

I moved your message to this discussion as I thought it would be easier for you to connect with other members who’ve talked about appointments at Mayo Clinic.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.

I’m tagging @barbj @cynaburst @ronaldpetrovich @jshah as well, to see if they might have any additional thoughts to share.

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Hi . I am Dr Jane from India. My daughter is diagnoised with hypertropic cardiomyopathy.

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Hello All:

I subscribe to an online copy of a magazine produced by the American Heart Association. There was an article written by a man with HCM which I found interesting and I thought you might as well. Here is the link:
http://heartinsight.heart.org/Spring-2019/Living-Differently/
Just wondering how your life is different as a result of your diagnosis?

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I had an alcohol ablation on 2-12-19. Doing well.

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@rpoulo

I had an alcohol ablation on 2-12-19. Doing well.

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Awesome! so happy that it worked for you. Take care

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