1. < Hypertrophic Cardiomyopathy (HCM)
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Hello and new to the group with HOCM diagnosis

Posted by margieinsb @margieinsb, Oct 7 3:37pm

Hello everyone,
I was diagnosed with HOCM this summer with multiple echocardiograms and an MRI. I had the genetic test, but no gene was identified. My father died of heart disease when he was 60, and there is a pattern of multigenerational paternal heart disease. I'm 74, athletic, fit and other wise very healthy. I am grateful for the good medical care I've gotten. It was a big surprise to have heart disease. Although I had been told occasionally that I had a murmur no follow up was recommended before this time. I am currently asymptomatic. I am taking Metoprolol 25 mg once a day in the evening, and instructions to stay hydrated. The obstruction is the mitral valve, and there is regurgitation and a moderate gradient.
I'm so happy to be part of this support group and will contribute anyway that I possibly can. Like many of you, I have faith in the Lord, and I am very blessed to have had a long and healthy life. Sometimes in the beginning of this journey, I was very frightened that I would suddenly die, or that I had "given" it to my two sons. Since I've learned more, I am calmer, but a bit obsessed!!!
Any suggestions are warmly welcomed. I wish you all a happy day and every success going forward.
Margie

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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margieinsb | @margieinsb | 1 day ago
In reply to @walkinggirl "@margieinsb You were referred to the HCM Center at UCLA, is that the same as UCLA..." + (show)
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@margieinsb You were referred to the HCM Center at UCLA, is that the same as UCLA Ronald Reagan Medical Center? If so, it is considered a COE (Center of Excellence) by the Hypertrophic Cardiomyopathy Association (see 4hcm.org) and that means you will be in excellent hands. Here is a list of the COE places from that website: https://4hcm.org/centers/

You may wish to find out more on septal ablation - here is an article from John Hopkins: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/alcohol-septal-ablation. When it was time for intervention with my HCM, the cardiologists both at Mayo and at home determined that a septal myectomy was the route to take with me, the alcohol septal ablation near my mitral valve may not have been as effective.

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@walkinggirl thank you for your wise and thoughtful reply. I will find out more about my appointment in LA at UCLA.

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jachrist | @jachrist | 21 hours ago
In reply to @margieinsb "@jachrist Thank you Jim. I'm so glad your comments about the ablation were very helpful. Do..." + (show)
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@jachrist Thank you Jim. I'm so glad your comments about the ablation were very helpful. Do you know if you had a high gradient?
Wishing you all the best. Margie

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@margieinsb
I do not recall if my gradient was high or not. FYI: I also have cardiac amyloidosis (stiff heart syndrome) and my heart does not pump adequate blood to my brain so I experience ischemic strokes. All 4 of my heart valves also regurgitate blood but not significantly. I also have a hole high in my heart in the septum. Surgery was tried through my femoral artery but the leads for my ICD interfered so it was not successful. I was placed on Eliquis to avoid blood clotting.
Jim

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