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?

@tkterrell

Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I’m still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at “low-risk” for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough…

I’ve just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

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Hello @tkterrell,

I can only imagine how worried you must be with this diagnosis! Before anything else, I’d like to welcome you to Connect and want you to know that you have joined a wonderful, supportive community, ready to share their experiences and insights which will, I am certain, help alleviate your worries.

I’m tagging fellow Connect members, @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos, to bring them into this conversation about hypertrophic obstructive cardiomyopathy, and hopefully address some of your questions and concerns.

Here is more information from Mayo Clinic, about HCM: if you click on this link, http://mayocl.in/1GGdGn4 you will see a number of informational videos, treatment options, patient testimonials that might interest you.

@cynaburst, @ronaldpetrovich have offered very valuable suggestions, and shared their insights about genetic testing; I would sincerely encourage you to also view this live discussion that took place recently, in which Steven Lester, M.D., cardiologist, at Mayo Clinic, Arizona. talks specifically about hypertrophic cardiomyopathy & genetics:
#MayoClinicHeartChat about Hypertrophic Cardiomyopathy & Genetics: http://mayocl.in/2nTVJQs

@tkterrell, being diagnosed with HCM can cause some difficult emotions; how are you managing your stress level? What lifestyle changes has your doctor recommended?

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Hi, I added my profile ..Not sure if I’m hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don’t.

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@fitchizumi

Hi, I added my profile ..Not sure if I’m hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don’t.

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Welcome, @fitchizumi. I can see your profile here: http://mayocl.in/2tx2mJX. To see your profile or anyone else’s profile, simply click their @name. In your bio, you mentioned that you’re having trouble with meds. Are you managing HCM with medication at this time? What issues are you having? Is surgery an option for you?

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@fitchizumi

Hi, I added my profile ..Not sure if I’m hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don’t.

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Yes I have lots of drug allergies . Yes a blood thinner and verapamil 120mg. It’s been changed lots of times.Exhaustion all the time.
Don’t know about surgery. Dr. Said something else would kill me. I might be to old plus I have other health problems some long term chronic.

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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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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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Dr. Omen did mine from Mayo.

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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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