Connect
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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Thanks for the invite. I underwent a septal myectomy two years ago and am feeling well after the procedure. I work at Mayo in communications, but even though I work here, have to say the experience prior, during and after has been amazing. I can be a local resource for you if you are ever in Rochester, MN. Thanks
You are very lucky to live near one of the best centers for HCM care in the world. If you are able, you could have all necessary testing done at Mayo and forego all the traveling. All of these other conditions could be related to what they are calling HCM. It seems like it would make sense to have it all looked at at once by the same place.
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1 ReactionWelcome. I understand how overwhelming it is. I had a good diagnosis of HCM, but questioned the treatment plan so I went to Mayo for a second opinion. I have never looked back. They were thorough, they were compassionate and, most importantly, they know their stuff. HCM is a difficult disease because it behaves differently in every person who has it. Mayo has the knowledge, the equipment and the personnel to give you what you need. Like I said, I never looked back.
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1 ReactionWelcome to Connect, @rmwundrow
I moved your message to the introductions discussion thread of the HCM group so that you can meet others who know what you and your husband are facing. Please let me introduce you to a few others like @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lisa7 @janicepike @mistymopps3 @choochoo @lisab62 @debcrawford
It is definitely overwhelming to absorb all the information you're getting and the battery of tests. You must have many questions. Feel free to ask us anything. We're listening.
Hi I am writing for my husband who was recently diagnosed with HCM. He is being seen at the Minn MN VA clinic and his last test was a stress echo. 120 pressures at rest and almost 400 at stress. Dr was present for test and talked at length with him as he described HCM and what the valves are doing. Overwhelmed! After reading much on the HCMA website I saw the link to the closest Dr who has experience in HCM and was happy how close a specialist in HCM really is to us. BTW we live in Wisconsin about 150 miles from VA and not sure how far from Rochester. Our heads are spinning. My husband also was recently diagnosed with Sarcoid, so tomorrow we are on our way to University of Minn Research for a PET/CT scan of his heart to rule out Sarcoidosis in his heart. Next appointment at the VA is Oct 25th for an Angiogram and mapping. He has had numerous other tests and we are getting weary. I would love to have a 2nd opinion and not even sure the VA Dr is considering. I asked my husband today to start thinking about getting a 2nd opinion and he said his is so tired of more Dr appointments he can't really think through that right now. Anyway, he also has ischemic heart disease (1 stent), pre-diabetic and has had 3 ablations over a number of years for Atrial Fibrillation. Again.....overwhelming. Just needed to talk to some folks who are in the same boat with us. Prayers are welcome. Thank you!
Hello,. I made my own.appointment with a Dr. Schaff, the surgeon. I was advised by my endro to see my cardiologist, because my thyroid condition was up to the max level. I happen to run across a mayo webinar, of my Icd, doctor/ genetic testing, and Dr.Schaff. I then called and made an appointment for a surgery consult. Whala!!! . Hade the surgery January 9th, of this year. A miraculous recovery, and no looking back. So thankful that I am not shy about advocating for myself. Energy level had tripled, my whole outlook is better. One of the key factors in my decision to go ahead with the surgery was insurance was great, and I was still healthy enough to withstand a major surgery.
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2 ReactionsPS I'm having a colonoscopy on the 11th of this month to see what's going on there.Fitchizumi
Hi, Seen my local cardiologist he keeps saying I'm fine. Got a copy of his info about me after my January visit. It's "there's a dynamic left ventricular outflow obstruction" she definitely has hypertrophic cardiomyopathy with asymmetric septal hypertrophy. My husband and I decided we're going to get hooked up with someone from a center of excellence. In November I go to Lehigh Valley Hospital PA to see a specialist in HCM.my local cardiologist probably will not enjoy this but that's the way it is. I asked him two months ago if he knew a center of excellence he said I don't know what you mean. Then I asked if He ever had to send a patient ,for examples ,a my ectomy.he said two to Abington Hospital in is 31 year career. Hopefully he will except our decision to see a specialist and he will work with him. My cardiologist said I'm not ready for any kind of invasive treatment This past Friday I had PVCs extremely strong .the nurse practitioner finally got to me and thought it was caused by a combination of my G.I. problems ,possible drop in potassium. Thank you for asking, I think if everybody in the group and keep everyone in my prayers. I'll let everyone know what the specialist says thanks again.
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1 ReactionHi @fitchizumi,
I hope you are keeping well. Have you been to the cardiologist for a follow-up?
I am a patient of HOCM.
I am from Pakistan Islamabad.