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?

Dr. Omen did mine from Mayo.

Liked by Jamie Olson

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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What can I do about being exhausted all the time. I walk each morning about 1/2 to 3/4 of a mile. After a full night sleep I still wake up exhausted .

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Get a date for surgery.

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@jeffjonestn

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

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Hi Jeff,
You may be interested in watching this Connect Video Q&A with Steven Lester, M.D., cardiologist, at Mayo Clinic in Arizona. He talks about hypertrophic cardiomyopathy and genetics http://mayocl.in/2sgOtSn
I also encourage you to read the comments from members. Feel free to ask them questions too.

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Do you feel tired, or more like out of breath? If the problem is feeling sleepy, maybe they can adjust your meds? You might be able to try a different dosage, or another type of drug like a beta blocker or maybe diltiazem, which is a different calcium channel blocker. Do you know if you are obstructed or not?

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@jeffjonestn

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

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You would be best served to find a cardiac team that specializes in HCM who also has a cardiac genetic counselor to order the proper tests for you. There are several companies that offer genetic tests for HCM, but you want to make sure that they order the most up to date panel, as new genes are being discovered all the time.

Where do you live?

As far as your children, all of your first degree relatives should be checked with a cardiac exam, including an echocardiogram. Children/adolescents between the ages of 12 – the end of puberty should be re-tested every 12 – 18 mos. until they show symptoms or stop growing. At that point, it can slow to every 5 years as long as they don’t show any signs.

If you are able to have the gene that causes HCM identified in yourself, then you could test them to see if they also carry the gene. If they don’t, then they can stop testing.

Here is a link to a page in the blog that I write about HCM about genetics and screening with links to some more authoritative sources:

https://hcmbeat.com/home/

Let me know if you have more questions.

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

Jump to this post

I struggled with verapamil , ca calcium channel blocker. It made me dizzy and tired. I then went to metoprolol, a beta blocker, which agrees with me more.

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@jeffjonestn

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

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Hi Jeff, my physician at Mayo said that in regard to HCM, a genetic test is still not full proof. My family was tested after I was diagnosed and I was told that the echocardiogram test is the best indicator of the disease, at this present time Thanks

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@jeffjonestn

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

Jump to this post

Hello @jeffjonestn,

It’s great to see you return to Connect; I’m so glad that you chose to post in this group.

In addition to Colleen’s recommendation, I would also encourage you to view these links from Mayo Clinic about Genetics and Cardiomyopathy:
Video: http://mayocl.in/2rxC61C
Mayo Clinic Q and A: Hypertrophic Cardiomyopathy May Not Cause Symptoms Until Later in Life: http://mayocl.in/2rKWCjn
Genetics and Cardiomyopathy: Mayo Clinic Radio Health Minute: http://mayocl.in/2ryfjTl

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Hi! I’m a 65 year old grandma, married with one child and one grandson. I taught school for several wonderful years. Three years ago I had Hodgkin’s lymphoma and Hcom was discovered.!!! Now it’s gotten some worse. I’m so glad to be here!

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Hey Terry,

Welcome! Glad to have you here. Lots of others here in the same boat. Feel free to share and ask advice of any and all of us!

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Thank you!!

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Hi, Terry, welcome!

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@terryviazanko

Thank you!!

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Hello @terryviazanko,

I’d like to ‘officially’ welcome you, and let you know that we are so glad you’ve joined us. We look forward to getting to know you, and I’m certain that @janicepike @debcrawford @lynnkay1956 @rmcmillan @lisa7 @margie11 @ninimurphy @mbcube @Sensation @vivian88 will join in with their insights, too.
@terryviazanko, will you tell us a bit more about you and HCM?

Liked by TerryViazanko

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Hi Terry Welcome. I have HCM too, but mine is Non Obstructive. Mine has gotten worse at times too. It’s never easy to deal with. I know how you feel. 🙁
Hope you feel better soon!

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