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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 14, 2018

Hi @keyster1976,

At Mayo Clinic, a multidisciplinary team of cardiologists, heart surgeons, heart rhythm specialists, geneticists, nurses and other specialists trained in treating hypertrophic cardiomyopathy collaborate to provide you with the best care possible. This collaborative approach means doctors can often evaluate you and develop an individualized treatment plan within two or three days.
You can learn more about Dr. Sameh Said, here: https://www.mayoclinic.org/biographies/said-sameh-m-m-d-m-b-b-ch/bio-20149338

This webpage about hypertrophic cardiomyopathy care at Mayo Clinic may also interest you, and I hope, help allay your concerns while we wait for other Connect members to share their insights: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Mar 14, 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

Yes, Dr. Said is one of the surgeons at Mayo who performs septal myectomy. He is one of the newer surgeons trained to do the procedure, which is why you see many others who have had Drs. Dearani and Dr. Schaff, but Dr. Said has been trained by both Dearani and Schaff and will do a great job.

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mbcube | @mbcube | Mar 14, 2018
In reply to @sankarpinaki "Hi say something about you" + (show)
@sankarpinaki

Hi say something about you

Jump to this post

That sounds like a lot - How old is he? I'm not clear on your term Arch Repair. Could you provide more details??

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keyster1976 | @keyster1976 | Mar 14, 2018

I live in Rochester so my HOCM cardiologist has been talking about it.

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janicepike | @janicepike | Mar 14, 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

Schaff is a suberb surgeon. His timing on the surgery is down to a science. He doesn't keep you in the heart machine long.

REPLY
barbjp | @barbjp | Mar 15, 2018

I am 2 weeks out from getting a referral to Mayo. How long can I expect to wait for an appointment and then surgery if recommended?

REPLY
2 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 15, 2018
In reply to @barbjp "I am 2 weeks out from getting a referral to Mayo. How long can I expect..." + (show)
@barbjp

I am 2 weeks out from getting a referral to Mayo. How long can I expect to wait for an appointment and then surgery if recommended?

Jump to this post

Welcome to Connect, @barbjp.
You may notice that I moved your discussion and combined it with this existing discussion about hypertrophic cardiomyopathy. I did so as I thought it would be beneficial for you to be introduced to other Connect members who may have more information that might help answer your questions.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, and participate with other members wherever you feel comfortable.

I'm confident that Mentor @cynaburst @janicepike @ronaldpetrovich @debcrawford, along with other members in this group, will return to share their insights.

@barbjp, would you share a bit more about yourself? When were you diagnosed? What symptoms are you experiencing?

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 15, 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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Sounds fantastic, @mbcube! I look forward to reading your article too, along with members in this group who, I know, will sincerely appreciate your time and effort. Thanks so much.

REPLY
jshah | @jshah | 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,

Please dont worry. I was at the same spot 3 weeks ago. My husband had the surgery at Mayo. Dr Schaff did his surgery and it went great. It is better not to watch all those videos. I was worried about what if something goes wrong and I will be left alone with 2 little kids. It was scary. Honestly if you are getting your surgery done at Mayo then please do not worry. You are in good hands. Dr. Schaff is the best.
Just think positive and hang out with ONLY positive happy people. You should know that my husband is recovering very well. He stop taking pain meds on week 3rd. He is just on Tylenol. So do not watch videos online of other people. Those videos had scared me too.. Me husband is doing lot better then what I saw online. Overall everyone is different. All you need to do is be positive and you will be fine.

REPLY
barbjp | @barbjp | Mar 15, 2018
In reply to @barbjp "I am 2 weeks out from getting a referral to Mayo. How long can I expect..." + (show)
@barbjp

I am 2 weeks out from getting a referral to Mayo. How long can I expect to wait for an appointment and then surgery if recommended?

Jump to this post

I was diagnosed nearly 9 years ago and sice that time have a stent and bundle bridge block diagnosed. I see my cardiologist annually and some years I have seen him more frequently. He did a TEE 3, maybe 4 years ago with no problems found. In February I had a heart catheterization because the nuclear stress test indicated a possible blockage, but showed problems with the mitral valve instead. I had a TEE a day later and he detirmined the septal wall had thickened significantly and I was referred to Mayo Rochester for surgery.
I am waiting to be called for an appointment or whatever is next.

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