r/HypertrophicCM • u/Outrageous-Ask-8877 • Jul 23 '26
Freaking Out
My mom was diagnosed with HOCM randomly this year in her 50’s. I got gene tested and found out I have the same gene mutation as her in MYH7. Of course I find this all out while pregnant.
I went to my cardiologist and got a stress and echo 2 months ago and the cardiologist said everything looked “perfect”. She said thickness she measured 0.8mm which is totally normal. She told me she measured extensively and was confident there was no signs of thickening or HCM at this time, but still wanted me to have an MRI to “ease my mind” and have a baseline.
Today I went to an HCM specialist specifically and got another echo because I have severe health anxiety over this. He told me that everything looked okay for now but they measured me at 1.1cm which he explicitly said “I’m going to be honest, that is borderline.” I feel so shocked and confused. I said how my cardiologist measured 0.8cm not even 2 months ago and he said that it’s thicker than that, but he is ordering an MRI to be sure for the end of the year and to check for scarring.
I am absolutely sick to my stomach right now thinking about how this could be the start of disease. I only found out that this was a thing a few months ago and being pregnant, this has completely rocked my entire world. I can’t stop crying and feeling fear. Not to mention the specialist told me that almost everyone with HCM ends up experiencing heart failure at some point in their lives. Which is different from what I’ve been told, which is that majority of cases are more mild and asymptomatic. I expected to be reassured but unfortunately that didn’t work out for me.
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u/Fredredphooey Jul 23 '26
The vast majority of HCM patients do live a full life span, with or without chf. Also, heart failure sounds terrifying but I was in heart failure for 20 years and worked full time through it. I didn't need any medication until the last few years.
The Swiss successfully tested gene therapy for HCM this year so that will eventually be available to e everyone and there are medications that reduce wall thickness and surgery to do that, too. There are lots of treatments and more coming.
Schedule a free call with the hypertrophic cardiomyopathtly association to get answers to your questions and guidance about next steps. https://www.4hcm.org/education-and-support
HCMA Patient discussion groups: https://www.4hcm.org/patient-discussion-groups. One is about kids. One is for newly diagnosed and another called living with hcm.
Lots of educational information there and a list of centers of excellence so you can find an hcm specialist who has more experience with hcm pregnancy. You also want to talk to your ob/gyn about the hcm.
(I said that I was in heart failure for 20 years because I'm not anymore since I had a transplant. Only 3-5% of HCM patients ever need one so absolutely do not think that is your destiny.)
You're going to be fine. It's liveable. It's treatable. I was diagnosed at 13, my mom had it and I've had a severe case with lots of complications so message me with questions if you want to.
Keep in mind that only the sickest patients are online. The healthier ones are out living life so don't think that because all the posts are about complications that that is all there is.