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?

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

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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@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.

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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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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

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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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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.

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

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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.

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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.

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@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.

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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

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@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

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@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

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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

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@carsangelop

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

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I have an appt this afternoon and will reply as soon as possible.

Thanks, Mark

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@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.

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Angelo
Have been being treated for HCM for about 4 years My Doctors are at the University of Pa Iam at this point maxed out on meds Docs are considering the alcohol ablation I will be following the discussions

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Angelo – An AICD at your age is not a big deal. But I wonder why now and not 4 years ago? New Doc? Did you have a Holter or other test/device that monitors your heart that showed issues? As for the ASA (alcohol septal ablation). Its not always as simple – as you have to have just the right anatomy for it to work. Many interventional cardiologist (the standard kind) prefer to do these, but if they are not expert HCM doctors, It may not be as effective as it should be (but they will rarely admit to this). If you are not being seen at a HCM Center of Excellence, its worth the effort. There, they look at what will work best for you (either a Myectomy or ASA).

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I am being treated by Dr Anjali Tiku Owens she specializes in Hypertrophic cardiomyopathyI have had all the studies Holter 48 and 21 day MRI of the heart Sterss echo and so on She did recommend a Difib 4 months ago but like all men I drug my feet and never did it However I did see a Doc that does the procedure and he agreed.I am having a Holter 48 hr and a stress echo next week and compare to the ones I had 15 months ago She did tell me the that the blood vessels needed to be in the right place for me to be a candidate for ASA.I was referred to Dr Owens by my former Cardiologist as he was by his own admission not conferable treating me This was about 4 years ago My Doctors age at the University of Pa After the studies she is going to see if I have any more room to increase my verapamil i take 180 mg 1 time a day I am maxed out on metoprolol I take 2 100mg a day Thank you for taking the time to respond to my post

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