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?

Sometimes tone and intent don’t come across so clearly on message boards. I don’t think that Justin was trying to shut down the conversation. I just think he was trying to give @vialox some helpful info.

In any event, we are happy to continue the discussion. I think the bottom line is that different people are referred different ways. Sometimes, local docs already have a relationship with Mayo and will make the referral. Sometimes, patients take the lead and refer themselves. At the end of the day, they all wind up getting the same great care at Mayo.

One thing that I have found to be true in the almost 20 years that I have been a HCM patient is that there is often a lack of knowledge about HCM by local cardiologists because they usually lack experience with HCM. It is not the thing that they usually treat, I myself bumped around through a few before I wound up with my current team, and even then, I still had to refer myself to Mayo when it became time for surgery. I think alot of learning to live well with this disease involves finding medical professionals who are experienced in treating the disease. HCMA and others have gone a long way to helping this become possible for many people.

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@cynaburst

Sometimes tone and intent don’t come across so clearly on message boards. I don’t think that Justin was trying to shut down the conversation. I just think he was trying to give @vialox some helpful info.

In any event, we are happy to continue the discussion. I think the bottom line is that different people are referred different ways. Sometimes, local docs already have a relationship with Mayo and will make the referral. Sometimes, patients take the lead and refer themselves. At the end of the day, they all wind up getting the same great care at Mayo.

One thing that I have found to be true in the almost 20 years that I have been a HCM patient is that there is often a lack of knowledge about HCM by local cardiologists because they usually lack experience with HCM. It is not the thing that they usually treat, I myself bumped around through a few before I wound up with my current team, and even then, I still had to refer myself to Mayo when it became time for surgery. I think alot of learning to live well with this disease involves finding medical professionals who are experienced in treating the disease. HCMA and others have gone a long way to helping this become possible for many people.

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Thank you♡♡ I was nudged by my endro, to seek out my cardiologist. I ran across the webnar, of Dr.Omen, and Dr. Schaff. Otherwise, I would still be sitting here today feeling lousy.

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I have a loop recorder fitted.. and every time I fill like my hcm is playing up. The loop recorder says all ok…. I can have what fills like a heavy weight on my chest and I find it hard to get a full breath. But the loop says alls well… my heart is in synus rhyme.. (sorry for my bad spellings)

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Hi all… I’m in the uk. And my docters took over 20years to tell me what was wrong. I’ve been blackin out from the age of 16…. I’m now 39 and was told I had hcm. 3 years ago… every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I’m here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well….. so my grandchildren will be safe… but any way no more about me.. hi all….. 🙂

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Hello @traceysmith,

Welcome to Connect. We are so glad to have you join us…and such a young grandma too!

I’d like to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @rmcmillan @catiemorris @wandikarnadi @barbararickard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @lisa7 @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @vivian88 @vialox @janicepike and others in this discussion.

@jigglejaws94 @mogirl92 could you share your insights about the loop recorder?

@traceysmith, do you feel that your heart is beating too fast or too slow? Have you told your doctors about the sinus rhythm and your recent symptoms?

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@kanaazpereira

Hello @traceysmith,

Welcome to Connect. We are so glad to have you join us…and such a young grandma too!

I’d like to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @rmcmillan @catiemorris @wandikarnadi @barbararickard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @lisa7 @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @vivian88 @vialox @janicepike and others in this discussion.

@jigglejaws94 @mogirl92 could you share your insights about the loop recorder?

@traceysmith, do you feel that your heart is beating too fast or too slow? Have you told your doctors about the sinus rhythm and your recent symptoms?

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Hi @tracysmith and welcome. Often times HCM symptoms are caused by obstruction and not arrythmias. Do you know whether you are obstructed? Are you seeing a doctor who is a specialist in HCM? I know there are several in the UK.

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@traceysmith

Hi all… I’m in the uk. And my docters took over 20years to tell me what was wrong. I’ve been blackin out from the age of 16…. I’m now 39 and was told I had hcm. 3 years ago… every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I’m here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well….. so my grandchildren will be safe… but any way no more about me.. hi all….. 🙂

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Welcome Tracey, welcome to the site. I think you’ll find the site can help you relate to others who are going through similar experiences. I’m 56 , was diagnosed with HCM two years ago and also had a septal myectomy at Mayo Clinic. The surgery changed my life. (full disclosure, I work at Mayo in Communications) It worked and I feel better than I have in years. I never blacked out but had shortness of breath and extreme fatigue and always felt like my heart was working way too hard.

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@traceysmith

Hi all… I’m in the uk. And my docters took over 20years to tell me what was wrong. I’ve been blackin out from the age of 16…. I’m now 39 and was told I had hcm. 3 years ago… every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I’m here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well….. so my grandchildren will be safe… but any way no more about me.. hi all….. 🙂

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Hello, and welcome, Tracey. I was misdiagnosed for 23 years, so I can relate. I agree, if you can find one of the HCM specialists in the UK, that is where you should be. You can check out http://www.4hcm.org and they can help you find someone. This disease is quite the challenge for those of us who have it, that’s for sure. It is so easily misdiagnosed and we, particularly women, get patted on the head and sent home. Been there, done that.

I presume you were gene tested and they found one of the HCM genes, correct?

Liked by janicepike

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@traceysmith

I have a loop recorder fitted.. and every time I fill like my hcm is playing up. The loop recorder says all ok…. I can have what fills like a heavy weight on my chest and I find it hard to get a full breath. But the loop says alls well… my heart is in synus rhyme.. (sorry for my bad spellings)

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@traceysmith Well put! Thanks for sharing about your loop recorder. Not to worry about spellings – we all understand what you are saying! Teresa

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@kanaazpereira

Hello @traceysmith,

Welcome to Connect. We are so glad to have you join us…and such a young grandma too!

I’d like to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @rmcmillan @catiemorris @wandikarnadi @barbararickard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @lisa7 @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @vivian88 @vialox @janicepike and others in this discussion.

@jigglejaws94 @mogirl92 could you share your insights about the loop recorder?

@traceysmith, do you feel that your heart is beating too fast or too slow? Have you told your doctors about the sinus rhythm and your recent symptoms?

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I do not have an obstruction, I had to go on line to find a docter. But I found one,and he’s only 2 hours way so not to bad… thanks. 🙂

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@traceysmith

Hi all… I’m in the uk. And my docters took over 20years to tell me what was wrong. I’ve been blackin out from the age of 16…. I’m now 39 and was told I had hcm. 3 years ago… every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I’m here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well….. so my grandchildren will be safe… but any way no more about me.. hi all….. 🙂

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Yes. I’ve been gene tested.. I’ll check that page out now.. many thanks. 🙂

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@kanaazpereira

Hello @traceysmith,

Welcome to Connect. We are so glad to have you join us…and such a young grandma too!

I’d like to introduce you to @cynaburst @lynnkay1956 @PatMattos @Sensation @rmcmillan @catiemorris @wandikarnadi @barbararickard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @lisa7 @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @vivian88 @vialox @janicepike and others in this discussion.

@jigglejaws94 @mogirl92 could you share your insights about the loop recorder?

@traceysmith, do you feel that your heart is beating too fast or too slow? Have you told your doctors about the sinus rhythm and your recent symptoms?

Jump to this post

I’ve had the loop for about 1 year 5 mouths… it has shown af, tackiecardia and bradycardia, eptopic beats,. (sorry for spelling). I fill my heart 24hours a day, more at nite when I’m in bed… when I got the loop fitted it only took them 10 mins… so much better then wearing a monitor… I tell my docter every thing.. but I’m not sure he hears what I say… (but I may be wrong)

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Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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Welcome to Connect HCM, @ataylor8668.
You’ve come to the right place to get your questions answered about your upcoming HCM surgery at Mayo Clinic. You’ll notice that I moved your message to the introductions thread so you can meet other members like. Allow me to introduce you to a few others who have had surgery at Mayo. Please meet @cynaburst @lynnkay1956 @PatMattos @janicepike @ronaldpetrovich @mbcube
@lisa7 @vivian88 and so many others. They can help answer your recovery questions.

You may also wish to read this discussion thread: “What is the recovery like following septal myectomy?” http://mayocl.in/2fdCxHz

Good question about the CPAP machine and surgery. @dawn_giacabazi might have something to add about that in particular. You can also find additional discussions about CPAP in the Sleep Health group: http://mayocl.in/2kSSYM6

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@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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Hi @ataylor8668 – Sorry you have to have surgery, but glad you are going to a great place.

I did buy myself a recliner for after surgery, and honestly, I found I didn’t need it. I slept better propped up with pillows and sleeping partially on my side on the couch. In fact, at Mayo I had a suite and found the sofa more comfortable for sleeping than the bed.

I wrote a blog about my myectomy experience at Mayo which you may find interesting, though it has been quite a few years ago now:

http://www.cynthiassummeradventure.blogspot.com

I have started a new blog that is generally about HCM which has a page of resources about preparing for myectomy which you also may find interesting:
https://hcmbeat.com/resources/resources-for-patients-about-myectomy/
Wishing you all the best as you go forward. Let us know how we can help advise you further.

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