HCM-ers: Introduce yourself or just say hi

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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Profile picture for vialox @vialox

Thank you everyone for your comments. I really appreciate your stories and experiences with this decease.
It is much easier to make a decision being prepared. I have already read a lot of posts on this subject but still feel hungry for more. I am from Illinois and my current symptom progressing makes me thinking how to arrange the appointment with Mayo.
Should I ask my local cardiologist for referral or I can do it on my own? What are the prons and cons for both?
What is an approximate wait time from scheduling until appointment? As I understand I need to see the Mayo's cardiologist first & go through some tests. If he recommends myectomy can I choose a surgeon?

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I called, and requested an appointment with Dr. Schaff, surgeon. They looked up my recird for my myocardiomyopathy, and scheduled me. I think it was 6 weeks out.

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Thank you everyone for your comments. I really appreciate your stories and experiences with this decease.
It is much easier to make a decision being prepared. I have already read a lot of posts on this subject but still feel hungry for more. I am from Illinois and my current symptom progressing makes me thinking how to arrange the appointment with Mayo.
Should I ask my local cardiologist for referral or I can do it on my own? What are the prons and cons for both?
What is an approximate wait time from scheduling until appointment? As I understand I need to see the Mayo's cardiologist first & go through some tests. If he recommends myectomy can I choose a surgeon?

REPLY
Profile picture for vialox @vialox

Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic's Drs and Surgeons at Lisa Salberg's HCMA site and Cynthia's blogs.

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Welcome,vialox, you will be so pleased with the care you receive at Mayo. They know this disease so well and are so patient centered, it is a pleasure to deal with them.

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Profile picture for vialox @vialox

Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic's Drs and Surgeons at Lisa Salberg's HCMA site and Cynthia's blogs.

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Hey @vialox! Welcome to Mayo Clinic Connect. I am so glad that you made the decision to travel to Mayo for care. You will be so happy that you did. Where are you from? When will your appt. be?

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Hi @vialox, my father had a septal myectomy done 5 years ago at the age of 78. He's doing fine and living a normal life now. It's good to hear that you're in touch with a high-volume center like Mayo and the community here where there's so much information available. Good luck and good health to you!

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Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @vialox,

We're so glad to have you here; If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

In the meantime, I hope @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 @lamborama @pbo2016 @mummy12 @mbcube will return with some information for you.

I also wonder if @murryone, @mikefox909, @slavinray, @hopeful33250, @mthomasb have any insights for you with regard to metropolol?

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Thank you, @kanaazpereira

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Hello @vialox,

We're so glad to have you here; If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

In the meantime, I hope @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 @lamborama @pbo2016 @mummy12 @mbcube will return with some information for you.

I also wonder if @murryone, @mikefox909, @slavinray, @hopeful33250, @mthomasb have any insights for you with regard to metropolol?

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Dr. Schaff did my surgery on January of 9th. For my apical myectomy. He is wonderful. Lucky to have had him.

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Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic's Drs and Surgeons at Lisa Salberg's HCMA site and Cynthia's blogs.

REPLY
Profile picture for melissa @melissax3

Hi,
I'm Melissa and started out with HOCM with atrial fibrillation. I was cardioverted a few times and then had an Alcohol Ablation which did get rid of the obstruction but 2 years later it's back. I am going to try it again. They say it happened because I have been taking strong medicines for 30 years. I had 3 kidney transplants. I just wanted to say hello and learn from you. Thank you!

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Hi @melissax3, I'd like to add my welcome. With the information you provided in your intro message, I'd like to let you know about a few other places you may wish to participate in.

Join others talking about HOCM here:
- Diagnosed with HOCM last year. May be time for surgery" http://mayocl.in/2ef1nMc

Meet other transplant recipients here:
- Transplants group http://mayocl.in/1qunnTn

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