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?

@kanaazpereira

Hello @thehound572001. I’m glad you’ve joined this incredible group on Connect – Welcome!
I’d like to share this video, where Dr. Steve R. Ommen, director, Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, reviews hypertrophic cardiomyopathy, sudden death and implantable defibrillators

Paul, with the additional diagnoses (heart failure, mitral valve disorder) what are the next steps in treatment?

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Well I guess my next step would be heart replacement, my obstruction is lower down so a myectomy is not on the books, my doctor does the NVO2 test on me to seen what my oxygen levee are and my last 1 came in at 24, 14 they do transplant is what they are telling me.

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@kanaazpereira

Hello @thehound572001. I’m glad you’ve joined this incredible group on Connect – Welcome!
I’d like to share this video, where Dr. Steve R. Ommen, director, Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, reviews hypertrophic cardiomyopathy, sudden death and implantable defibrillators

Paul, with the additional diagnoses (heart failure, mitral valve disorder) what are the next steps in treatment?

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Thanks for the message back, still trying to get used to the way this is setup, sorry it took awhile to reply back, I hope what I say on here helps others to deal with there issues, it can be hard to deal with this condition, I watched my mother go through it, now I am going through it, I seem to have more symptoms that her though…

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Hi all. It has been 3 years since my diagnosis of hypertrophic obstructive cardiomyopathy, and the two heart procedures I received from the Mayo Clinic. The 1st procedure was septal reduction by alcohol (it did not work), then I was finally given the option to have the septal myectomy (which I researched and wanted in the first place) and that went very well, thanks to Dr. Hartzel Schaff. This is just a snippet of my story. I have been looking for a support group for quite sometime, that did not charge a hefty fee yearly. I am interested in listening to others experiences as I have felt alone in this journey from the start.

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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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I'm confused. I just signed onto this today, but there is another group? "new (HCM) group on connect?"

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@bmc123

Hi all. It has been 3 years since my diagnosis of hypertrophic obstructive cardiomyopathy, and the two heart procedures I received from the Mayo Clinic. The 1st procedure was septal reduction by alcohol (it did not work), then I was finally given the option to have the septal myectomy (which I researched and wanted in the first place) and that went very well, thanks to Dr. Hartzel Schaff. This is just a snippet of my story. I have been looking for a support group for quite sometime, that did not charge a hefty fee yearly. I am interested in listening to others experiences as I have felt alone in this journey from the start.

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My husband was diagnosed with HCM 30 years ago and last October had septal myectomy by Dr Schaff and I think he now realises how compromised he was. He was convinced that the ablation would suit him better but after a long consultation with Dr Geske had the surgery instead. Stay in touch on this group it’s helpful and supportive

Liked by angiev18

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I'm sure glad to hear positive things about Dr Schaff. That is who is doing my surgery.

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@bmc123

I'm confused. I just signed onto this today, but there is another group? "new (HCM) group on connect?"

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Hi @bmc123 and welcome to Connect. The post you are referring to was introducing the members to the new HCM group on Connect that you are now a part of! There is only the one HCM group.

Thank you for sharing your story. How have you been feeling since your septal myectomy?

Liked by angiev18

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Hello. I was diagnosed with HCM roughly 10 years ago. This past December I had a septal myectomy dome at the Mayo Clinic Inn Rochester. I look forward to participating in this group.

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@joerussell

Hello. I was diagnosed with HCM roughly 10 years ago. This past December I had a septal myectomy dome at the Mayo Clinic Inn Rochester. I look forward to participating in this group.

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Welcome thus is a great supportive knowledgeable group

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@sheim

I am under the impression that my upcoming Septal Myectomy will be covered by Medicare but in the packet I received from Mayo they say to check with your insurance to see if you need pre approved. I called Medicare and all I got was since I have original Medicare I can go anywhere. For those who have already had this surgery were any of you on Medicare?

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Septal Myectomy is covered by Medicare, the only thing that Medicare didnt cover was blood sugars which seems odd.

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@sheim

I do not have a pacemaker or defibrillator and am hoping this will prevent me from having to have one. Am also hoping I can get off the Disopyramide. That stuff is AWFUL. I've read there is a Rx to help with the dry mouth, nose, eyes but ….who wants to add yet another medicine when I'm anti Rx in the first place. I'm normally even anti doctors but when a 2nd cardiologist read all my reports and said he agreed I decided maybe mine knows what he's talking about ….haha. The second guy also said it looks like it's possible I'll be referred for a sepal myectomy and if I were his patient I'd ONLY be sent to Mayo. When I had a follow up with my doctor and he suggested the surgery and also said Mayo I did feel better. He even said there is a doctor in Boise who said he would do it but he didn't recommend it. Then told me the stats. WOW! I had no idea how few of these are done and totally understand now why places like Mayo and Cleveland are the places to go.

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The Septal Myectomy was very effective for me at the Mayo. The pacemaker and defibrillator is for a different component of this heart disease, which is an electrical component. The myocytes in the heart Are configured differently than in a normal heart. It is called “ myocyte disarray”. It can lead irrregular and potentially lethal heart rhythms like ventricular tachycardia and ventricular fibrillation. This of course can lead to sudden-death. You may want to talk to your second cardiologist about a pacemaker and defibrillator. Good luck.

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@sheim

I do not have a pacemaker or defibrillator and am hoping this will prevent me from having to have one. Am also hoping I can get off the Disopyramide. That stuff is AWFUL. I've read there is a Rx to help with the dry mouth, nose, eyes but ….who wants to add yet another medicine when I'm anti Rx in the first place. I'm normally even anti doctors but when a 2nd cardiologist read all my reports and said he agreed I decided maybe mine knows what he's talking about ….haha. The second guy also said it looks like it's possible I'll be referred for a sepal myectomy and if I were his patient I'd ONLY be sent to Mayo. When I had a follow up with my doctor and he suggested the surgery and also said Mayo I did feel better. He even said there is a doctor in Boise who said he would do it but he didn't recommend it. Then told me the stats. WOW! I had no idea how few of these are done and totally understand now why places like Mayo and Cleveland are the places to go.

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Myocardial disarray

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Hi! I just found out I have HCM. I wonder how long I have had it. I finally found a doctor that did the needed testing. I have have issues for a couple years.

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Hi @anita61964 @joerussell @

Welcome to Mayo Clinic Connect – so happy that you’ve joined this incredible group!
Here’s some information about HCM (symptoms, diagnosis, treatment) from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

@anita61964, I can imagine you must have so many questions! You mentioned you’ve had issues for a few years – are you able to share a few details?

@joerussell, I’d like to introduce you to a few members who’ve shared some great insights about septal myectomy; Please meet @carsangelop @rrowner2 @ronaldpetrovich @priscilla1972 @ronitb @knecht @ninimurphy @mbcube @dp52350 @jtaylorl @mk1957. You might also be interested in reading their posts in these discussions on Connect:
– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/
– Septal Myectomy & Mitral Valve Repair Surgery on Jan 30th https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/
– Surgery https://connect.mayoclinic.org/discussion/surgery-2/

May I ask how the recovery process has been for you, @joerussell?

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@thehound572001

Thanks for the message back, still trying to get used to the way this is setup, sorry it took awhile to reply back, I hope what I say on here helps others to deal with there issues, it can be hard to deal with this condition, I watched my mother go through it, now I am going through it, I seem to have more symptoms that her though…

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Hi @thehound572001,

The power in shared experiences is knowing that you are not alone – thank you for sharing your story. I also hope that reading fellow Connect members’ experiences will ease your worries, some. How often do you have to do the NVO2 test?

Liked by angiev18

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