1. < Hypertrophic Cardiomyopathy (HCM)
Profile picture for Colleen Young, Connect Director
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.

Profile picture for carsangelop
carsangelop | @carsangelop | Mar 29, 2018

Angelo 69 YO have been being treated with meds for about 4 years Iam at the point where doctor is wanting a difib and pacemaker.Then talk about AIB

REPLY
1 reply
Profile picture for gwenm
gwenm | @gwenm | Mar 20, 2018
In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)
Profile picture for Cynaburst, Alumna Mentor @cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

Jump to this post

@tkterrell just a note of reassurance. I’m 62 and had symptoms in third grade when i was 8 years old and kept getting short of breath on the playground. You will learn to adjust, your body will support you and there are treatment options being tested and developed all the time. I self-referred myself to Mayo in Rochester. 10 years ago became they specialize in HCM diagnosis and treatment. I go every few years to monitor the status of my condition. Good luck. Let me know if I can be a sounding board for you. I is shocking and scary at first and seeing that others live a normal life will help. Gwen

REPLY
Profile picture for gwenm
gwenm | @gwenm | Mar 20, 2018
In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Connect HCM-ers
@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

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

Jump to this post

Hi Ronald. I have HCM, diagnosed 30 years ago, symptoms started as a child but no one knew what was wrong. I’m coming to Mayo Rochester April 2-5. I’d enjoy a chance to meet you and hear about your experience. I’m also a writer and want to get more involved on social media. I have open time on Wednesday April 4 for lunch or available all afternoon. Could we meet? Thanks Gwen

REPLY
Profile picture for sankarpinaki
sankarpinaki | @sankarpinaki | Mar 18, 2018

Hello ,my name is pinaki Sankar and I am from India and diagnosed with hcm unobstructive 4months ago. I am 45yrs old. I heartily wish you.

REPLY
Profile picture for sundymorning
sundymorning | @sundymorning | Mar 18, 2018

Hello. My name is Sundy and I am 33 years from Miami, Fl. I was diagnosed with HCM 5 months ago. I gain 30 lbs in 3 month and could lose weight. I went to a weight loss doctor and he did a ekg. He told me I had an acute MI. I went to a cardiologist who had me get a cardiac cath. They notice my heart was enlarged. They put me on medication that have made feel normal again. I am happy I know what my diagnoses is. I happy to be part of this group.

REPLY
Profile picture for sankarpinaki
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)
Profile picture for mbcube @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

REPLY
Profile picture for Cynaburst, Alumna Mentor
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)
Profile picture for mbcube @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
Profile picture for sankarpinaki
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)
Profile picture for mbcube @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, 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
Profile picture for sankarpinaki
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)
Profile picture for keyster1976 @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
View MoreView Less
Please sign in or register to post a reply.