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?

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

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@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!

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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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@sankarpinaki

Hi say something about you

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

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@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!

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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.

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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?

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@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?

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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?

Liked by janicepike

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@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.

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@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!

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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.

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@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?

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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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@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.

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@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!

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

REPLY
@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!

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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?

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@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.

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@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!

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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. 🙂

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