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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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HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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Hello @tkterrell,
I can only imagine how worried you must be with this diagnosis! Before anything else, I'd like to welcome you to Connect and want you to know that you have joined a wonderful, supportive community, ready to share their experiences and insights which will, I am certain, help alleviate your worries.
I'm tagging fellow Connect members, @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos, to bring them into this conversation about hypertrophic obstructive cardiomyopathy, and hopefully address some of your questions and concerns.
Here is more information from Mayo Clinic, about HCM: if you click on this link, http://mayocl.in/1GGdGn4 you will see a number of informational videos, treatment options, patient testimonials that might interest you.
@cynaburst, @ronaldpetrovich have offered very valuable suggestions, and shared their insights about genetic testing; I would sincerely encourage you to also view this live discussion that took place recently, in which Steven Lester, M.D., cardiologist, at Mayo Clinic, Arizona. talks specifically about hypertrophic cardiomyopathy & genetics:
#MayoClinicHeartChat about Hypertrophic Cardiomyopathy & Genetics: http://mayocl.in/2nTVJQs
@tkterrell, being diagnosed with HCM can cause some difficult emotions; how are you managing your stress level? What lifestyle changes has your doctor recommended?
My physician at Mayo said that genetic testing still has a ways to go when identifying the HCM gene, in that it does not always show up. Getting a second opinion is your call, but here is a recent study that shows it is prudent to do so, and if you would, it would be recommended to visit a Center of Excellence regarding HCM. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/
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1 ReactionMcComb, Mississippi
The likelihood is that you will live your life with few changes due to your diagnosis. They have so far only identified some of the genes that cause HCM, so just because your test came back negative does not mean that yours is not genetic.
Nevertheless, it is best to be treated at a place that has substantial expertise with HCM like Mayo Clinic who can do a thorough assessment of your situation. Where do you live?
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2 ReactionsHello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I'm still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at "low-risk" for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough...
I've just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.
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2 ReactionsFirst, you are in great hands. In my case, (I had a septal myectomy and double bypass in Dec of 15) the surgery dramatically improved my health. The Mayo team was wonderful from everyone I was in contact with. (Full disclosure,I work here in Public Affairs) I could tell my heart was pumping so much better even after the first day. When it was quiet I could hear the strong heart beats, which I never could before. With that said, the experience was tough the first two days, but it improved quickly. I would recommend that you aggressively try walking and push yourself and enroll in cardiac rehab if at all possible. I would strongly recommend a recliner. We didn't have one after the surgery and that would be one of the first things we would have done in hindsight. It was really hard to get up off the couch or out of bed the first three weeks. I felt like a turtle. Good luck.
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1 ReactionThanks for the response. I am planning on having my teeth looked at by my dentist in the next week or so (if he can squeeze me in) as I was scheduled for July- which is too soon after the surgery. Think I will invest in a recliner. Thanks
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1 ReactionThey do this all the time. Grrrrrrr.
I want to bring up the real facts on teeth cleaning, and having a colonoscopy. I am 14 weeks out, and was under the impression that I could get my teeth cleaned after 3 months. Especially after spending thousand dollars and more on periodontal disease before the surgery. It was quit the fiasco going back and forth with the dentist office, and finally getting to the real reason and truth behind the reasoning. I was told that they don t want you to have anytjing done for 6 months. Not to risk any infection. The same goes for a colonoscopy. I am contacting Mayos patient advisery people to hopefully put it in the guides, for after surgery.
I was a HAPPY camper in my recliner. Just shows what works for one, and not the other. A day short of 14 weeks out of my myectomy.