Advice for apical HCM/ distolic dysfuction II/nonsustained vtach

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

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.

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.

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.

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)

Hi, I also have AHCM - non obstructive as that is one of the characteristics of the apical type, with preserved ef of about 52%. I have had an ICD since 2008. I am having similar symptoms with increased PVCs and non-sustained v-tach episodes getting more frequent and longer in duration and the Boston Scientific Heart Failure Index numbers steadily climbing into troublesome territory. My doctors don't seem to be too concerned, as I am, but my cardiologist and electrophysiologist agreed I should take metoprolol low dose to see if that helps the situation as my bp is already low. I recently had a cardiac mri, which was read by a cardiologist I know is not knowledgeable at all with respect to AHCM, and any potential of an apical aneurysm, so I question his findings. So I finally got a referral to a COE in Seattle and will see them in early February. I don't think my particular situation qualifies for a myectomy, and I don't know if there is anything more they can do for me besides the medication, but I would like to hear it from an expert in the field before I accept that this is just going to be my new normal and that all I can do is to keep praying.