1. < Hypertrophic Cardiomyopathy (HCM)
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @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?

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

Deanna Constans | @deannaconstans | Mar 15, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.

I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.

The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.

I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.

Here is to hope of new and invigorated life!

Jump to this post

Full disclosure: I am a moderator here AND I work at Mayo. I wanted to confirm what @cynaburst wrote that Dr. Said is fully trained in this operation and does this procedure several times a week -- you will be in great hands with any of the three surgeons here who perform this operation.

REPLY
janicepike | @janicepike | Mar 15, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.

I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.

The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.

I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.

Here is to hope of new and invigorated life!

Jump to this post

Are you scolding me? I will state what I want, and advocate for what is true.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.

I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.

The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.

I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.

Here is to hope of new and invigorated life!

Jump to this post

Hi @janicepike, no one is scolding you. Your experience with Dr. Schaff is very valuable. Your comments are always welcome and appreciated as a valued member of the HCM community on Connect.

I'm not sure who you thought was taking issue with what you posted. Deanna was merely confirming what Cynaburst wrote about the team approach at Mayo Clinic, and Dr. Said's qualifications. Her comment was unrelated to your post.

Does that make sense?

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Mar 15, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.

I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.

The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.

I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.

Here is to hope of new and invigorated life!

Jump to this post

@janicepike - No one is scolding you! Of course we all agree that Dr. Schaff is a fantastic surgeon! But he alone can't operate on everyone! He needs some help every how and then so he can take a vacation! That is why Dr. Said has been trained to also perform the operation. Mayo wants to make sure that it has younger surgeons who will be able to meet the demand for the surgery and to take care of people in years to come.

REPLY
Deanna Constans | @deannaconstans | Mar 15, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.

I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.

The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.

I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.

Here is to hope of new and invigorated life!

Jump to this post

Hi @janicepike -- if you are referring to my post, I meant it as a reply to what @cynaburst said. Please take no offense -- I meant none. Just reassurance for @keyster1967 that Dr. Said is well-qualified to perform septal myectomy. This surgery is scary to undertake (as perhaps all surgeries are), and I just wanted to reassure people that all three doctors are very well trained and qualified. 🙂

REPLY
keyster1976 | @keyster1976 | Mar 15, 2018

So got a call today changing my surgery consult to 3-30 and asked why they changed it from 4-2. The person said that 4-2 was when I was scheduled for surgery. Has anyone experienced the process going that fast for septal myectomy

REPLY
sankarpinaki | @sankarpinaki | Mar 16, 2018
In reply to @keyster1976 "Hello all just found out 2 months ago that I have HOCM. I have never had..." + (show)
@keyster1976

Hello all just found out 2 months ago that I have HOCM. I have never had so many tests in my life. Have a surgical consult on 4-2 to have a defibulator installed and septal myectomy surgery.

I have scared myself half to death with all of the videos and articles that I have read in the last 2 months. One that I watches yesterday made me finally say if they say yes t o septal myectomy I am all in.

The question that was asked was about how is HOCM affecting your life. I have been looking at it and did not really realize how many activities I avoid doing. I looked back to 3 years ago to now and it is dramatic. Last summer I was unable to mow more than a quarter of my lawn at a time without feeling like I was going to die. I love to ice fish and I don't go now unless we can drive on the ice as I can not walk a mile.

I just hope that with surgery I will be normal again. Want to do things with my kids and don't because I become out of breath.

Here is to hope of new and invigorated life!

Jump to this post

Hi@deannaconstans, I am from India and diagnosed with hcm. I do not have enough money to travel USA Mayo clinic. Can I get a chance to be treated there at free of cost. Can you help me positively.

REPLY
sankarpinaki | @sankarpinaki | Mar 16, 2018
In reply to @mbcube "Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit,..." + (show)
@mbcube

Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit, I scheduled my surgery as well as I knew I was a candidate. I was hoping for an alternative treatment, but it wasn't in the cards. The surgery group is a bit "detached" from the HCM clinic in that they do other heart surgeries. I've not heard of Dr Said, but I can assure you he's likely very competent. He may even be the main surgeon with Dr D or Dr S observing/assisting. Or pehaps he does the evaluation and his comments/observation is sent to the other known doctors - not sure. This is a question to ask when you are evaluated. Have you looked him up in the Physician biographies? If not here is a link: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338
And yes, the risk is low (at a COE). I've drafted an article "so your having a myectomy" that is based on my 3 visits and myectomy surgery. Essentially its a what to expect, helpful hints (for you and your family), general orientation of the Mayo process. It should be completed soon, and I will post it.

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Hi, can you focus on the use of MYK-461 medicine in hcm treatment. A new drug which is on trial and how far it has progressed .I came to know about it from a e site

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Mar 17, 2018
In reply to @mbcube "Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit,..." + (show)
@mbcube

Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit, I scheduled my surgery as well as I knew I was a candidate. I was hoping for an alternative treatment, but it wasn't in the cards. The surgery group is a bit "detached" from the HCM clinic in that they do other heart surgeries. I've not heard of Dr Said, but I can assure you he's likely very competent. He may even be the main surgeon with Dr D or Dr S observing/assisting. Or pehaps he does the evaluation and his comments/observation is sent to the other known doctors - not sure. This is a question to ask when you are evaluated. Have you looked him up in the Physician biographies? If not here is a link: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338
And yes, the risk is low (at a COE). I've drafted an article "so your having a myectomy" that is based on my 3 visits and myectomy surgery. Essentially its a what to expect, helpful hints (for you and your family), general orientation of the Mayo process. It should be completed soon, and I will post it.

Jump to this post

Hi @sankarpinaki - This drug is still experimental and is going through the FDA trial process in the U.S. They have gotten good results so far, and they are about to move into Stage 3 trials. I am not sure where you are located, but talk to your doctor and see if you are a candidate for the trial. They may have to refer you elsewhere if you are not near a location for the trial. Hope that helps. If you want specific information, I write a blog at http://www.hcmbeat.com which has published several entries about the drug and MyoKardia. Come on over and do a search or you can select the word in the keyword tag cloud, and they should all come up for you.

REPLY
sankarpinaki | @sankarpinaki | Mar 17, 2018
In reply to @mbcube "Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit,..." + (show)
@mbcube

Have you been seeing a local doctor who has mentioned having a Myectomy? My first visit, I scheduled my surgery as well as I knew I was a candidate. I was hoping for an alternative treatment, but it wasn't in the cards. The surgery group is a bit "detached" from the HCM clinic in that they do other heart surgeries. I've not heard of Dr Said, but I can assure you he's likely very competent. He may even be the main surgeon with Dr D or Dr S observing/assisting. Or pehaps he does the evaluation and his comments/observation is sent to the other known doctors - not sure. This is a question to ask when you are evaluated. Have you looked him up in the Physician biographies? If not here is a link: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338
And yes, the risk is low (at a COE). I've drafted an article "so your having a myectomy" that is based on my 3 visits and myectomy surgery. Essentially its a what to expect, helpful hints (for you and your family), general orientation of the Mayo process. It should be completed soon, and I will post it.

Jump to this post

Thanx ,I am from India and west Bengal. Can u tell me where and whom shall I consult

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