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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.
I invite you to follow the group. Simply click the follow icon 
on the group landing page.
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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Connect’s alumna mentor, @cynaburst, just published this travelogue blog entry about her recent visit to Mayo Clinic’s hypertrophic cardiomyopathy clinic in Rochester. "I hope that you find it to be informative. In my admittedly biased opinion, it is the best treatment for HCM in the world."
https://hcmbeat.com/2019/02/02/visiting-mayo-clinic/
The best thing you will ever do for yourself would be a second opinion and if you can get to Mayo Rochester the HCM program is awesome. My husband had septal myectomy last October after being diagnosed with HCM 30 years ago. We live near San Diego and had great care from the cardiologist but when the HCM became obstructive the cardiologist recommended Mayo because of their expertise.
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1 ReactionFull disclosure-I work at Mayo in Communications. Frist want to thank (@kanaazpereira for moderating and @cynaburst for doing such a great job advocating for HCM patients and her blog HCM Beat.
I had a septal myectomy at Mayo (the team was amazing) about three years ago and am really glad I did it. As far as diet, I would say moderation; my case is unusual in that my appetite decreased after surgery and I have lost at least 40 pounds. I have followed up and the tests show that I'm healthy and my blood counts are good And don't be afraid to exercise after the surgery. A good thing about my cardio rehab was that the rehab team proved to me that I could work out with intervals training. I try to get my heart rate up to about 130 beats a minute several times during a half hour workout.
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1 ReactionI’m impressed, my husband lost weight post surgery about 8lbs. We’ve always (tried hard) to eat a healthy diet and exercise which, I believe, made an enormous difference in his recovery. As far as heart rate of 130 the defibrillator would go off lol but we walk 3 miles per day and keep very active generally.
I’m also a little biased because our daughter is a nurse at Mayo Jacksonville
I am in a unique situation since I had a total knee replacement last August so am still recuperating from that as well as dealing with my HCM. In that last 2 months I have started been able do more cardio workouts on an exercise bike and treadmill both of which I have at home. Being on a regular exercise program has made me feel much better. I also lost quite a bit a weight after my knee surgery partially due to that but then I also realized it was also due to a loss of appetite from my heart meds which we have modified and changed a bit. That has helped. The main med that was causing me problems was a higher dose of Metropolol twice a day. We have dropped that dosage which has helped a bit. I wish there were more medications available with fewer side effects.
As far as diet is concerned, I now tend to eat more smaller healthy meals and snacks throughout the day with a boost of a protein drink at some time each day. As far a lifestyle changes, I cannot do the same level of work around the farm so have had to adjust my work load and expectations. I am working on the principle of less is more. I have also started to meditate each day which is supposed to have positive benefits. I want to make sure I have the energy to hang out with my 4 year old grandson as much as possible which is exerting in itself. I appreciate having a community of people with which to share our experiences.
Sending this link too from @cynaburst post which details recovery and some background
https://hcmbeat.com/tag/ron-petrovich/
No It was done in Arkansas in Hot Springs
hi -I'm Phyllis, just an 87 year old curious about your site. Not quite sure I want to be involved, just exploring.
Was just wondering how long it takes Mayo Clinic to get back to you to set appointment after my doctor forwarded all my info to them. It will be 2 weeks tomorrow.
I also wondered because my husband waited 4 weeks but looking at the schedule we received I realized why. Numerous appointment scheduled over 4 days when they are dealing with 4 different departments and several hundred more patients it all made sense. So don’t give up, everything will work out well with appointments for you
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