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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.
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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?
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HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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I had my successful surgery 7/22 at Mayo, I thought I was pointing someone in the right direction. Your comment will be helpful to others!
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1 ReactionHello @walkinggirl -
Following up on your question in regards to referrals for surgery. Have you already been in contact with the Concierge Services but they said you needed an appointment first? You can self-refer by requesting an appointment at Mayo Clinic, or you can have your current provider request an appointment for you as well. http://mayocl.in/1mtmR63 to get started.
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1 ReactionYou are most welcome. As you know an angeogram is non intrusive so relatives of people with HCM have no reason not to be tested. If not for themselves, then for their own heirs. We need to end this hereditary disease.
@jachrist thanks. I have reminded my siblings so they will have to take it serious. My maternal side thinks its my paternal side with whom I have no contact.
Leo,
HOCM or HCM can be at any age. I would suggest that you try to find out who in your family has this heart disease and get tested with an Echocardiogram.
Jim
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1 ReactionI have upcoming appointments at the Mayo clinic with my Cardiologist and with a Neurologist.
I currently experience periodic episodes of being light headed, dizzy, and at times it even affects my vision. These episodes are generally only seconds to a minute long in duration.
Sorry to hear there is no contact, but at least being tested with an Echocardiogram is the best that you can do. There is a 50/50 chance that relatives can also be positive for HCM.
Hi @jachrist,
I have told my siblings- I need to remind them again. Not the one living with my living parent. I suspect its on the paternal side which I have no contact with.
Hi @karukgirl. Thanks for the warm welcome. I am hooked on the information here and just snowballing into other resources. In the year leading up to that I was feeling dizziness and syncope a few times momentarily. I had done a gall stone removal surgery a few weeks before that (Sept 2022) and was feeling great. I was back exercising and losing weight, doing intermittent fasting. Christmas day I did heavy cardio. Boxing day, I woke up feeling light headed, dizzy, faint, nervous- just couldn't relax. At the hospital my BP was very high and couldn't settle down. They called Cardiologist and that's where it all started. I had a high CK level and diagnosed with Rhabdomyolysis and had to return the next day to flush this out the blood since it didn't wash through sufficiently. That week, I went through a lot. In the end I did stress test on cardio, 24hrs & 1 week monitor, ECG, EKG, MRI, Blood test. I did feel scary palpitations a few times in the weeks after this however, this might be related to stress. I was away from the UK at the time. I was put on medication. I was then passed to a more specialist hospital and the entire process restarted. I had to return to the UK. Once I was here I had to again do over everything followed by genetic testing- that's 3 times doing the same diagnoses. After 9 months I went for check up- I think 1 week monitor and some scans. I should be back in a few months. I only get dizzy but I think that's because of bisoprolol in the morning. I do get tired during the week and after a long back and forth I have negotiated working 1 day/ week from home. I think I need to change career so I don't need to go out to work 5 days/week. I haven't had any palpitations since I returned to the UK. The only time I had palpitations was when I tested + for COVID in Nov 2024.
Good evening Leo! So glad you found this site. As a HOCM patient you need to have other relatives get echocardiograms to see who else in your family has this hereditary disease. Adults who are negative need to be tested every 5 years. Kids under 18 need to be tested every year. Nobody knows when they will show signs of being positive for HCM.
I was 67 when I was diagnosed, but my breathing was labored for many years and was miss diagnosed as being an asthmatic. My Father was miss diagnosed with labored breathing and it was blamed on cigarette smoking.
Please have all of your relatives tested for HCM. Once I was diagnosed, other relatives have also been diagnosed.
Best to You!!
Jim