1. < Hypertrophic Cardiomyopathy (HCM)

Advice for apical HCM/ distolic dysfuction II/nonsustained vtach

Posted by apdaye @apdaye, May 15 8:53am

I just spent 5 days in the hospital, heart cath, stress test and echo. My EF is preserved. No obstruction. The electrophysiologist told me my septum was too thickened for him to do ablation. I have tried multiple anti-arrhythmic s and nothing stops my runs of v-tach( which are sporadic and non sustained. However, lasting several seconds I become near-syncopal. So I am sent home with elevated troponin, T wave abnormalities,and told I must take metoprolol again. I feel like I am getting worse day by day. I presented to the ER with mild chest pain and mild left arm weak sensation. When I mentioned myectomy to my cardiologist’s NP, she didn’t know what I was talking about! So , my fear is not about the nonsustained v-tach( I have a pacer/defibrillator), but when will my heart completely fail due to stiffness and inability to relax the Left ventricle? No one seems to know how to address this. Since I am technically non obstructive , I do not qualify for camzyos.

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brumasterj | @brumasterj | May 16 8:24am

Wow it sounds like uour well informed of your prognosis.
Are you being seen at a COE?
If not i would highly encourage the second opinion from one!
My local hospital and primary doctor misdiagnosed me for years it wasnt till i went to mayo that i finally got answers!
Best of luck to you and hope you get answers

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jilljan | @jilljan | May 16 9:49am

Agree. Call the HCMA 973-983-7729 and ask where there is a COE near you. Do it today! This organization is priceless for advice and they set-up an intake call and a call with a nurse. They will help you navigate this chronic illness.

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emo44 | @emo44 | May 17 12:46pm

Agree with the comments by jilljan and brumaster - find a COE near you. I can't say enough good things about my experience with the HCM clinic at Mayo, Rochester, but know there are other COEs around the country depending upon where you live. And, the HCMA is definitely a benefit for all of us. Join and let them help you.

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jasonfromco | @jasonfromco | 2 days ago

Wondering if you had any updates or if your care team was able to provide info about whether you'd be a candidate for myectomy? Hope things have worked out for you.

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1 reply
apdaye | @apdaye | 1 day ago
In reply to @jasonfromco "Wondering if you had any updates or if your care team was able to provide info..." + (show)
@jasonfromco

Wondering if you had any updates or if your care team was able to provide info about whether you'd be a candidate for myectomy? Hope things have worked out for you.

Jump to this post

Thank you for asking. I found an electrophysiologist who was able to ablation on 3 areas. He does not do myectomy but I liked him very much. I follow up August 20. I am going to see (after healing time). If I need a second procedure. So far, the PVCs have lessened dramatically. The ones I still have are less intense and do not progress into v-tach with near-syncope. Thus far , I am pleased. I also have slept better( two weeks out). Which tells me the nocturnal episodes have also lessened! Dr Matthew Quin in mobile, Al is my new hero. ( I am still taking metoprolol for now until he says ok to stop)

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