HCM-ers: Introduce yourself or just say hi

Hello @thehound572001. I’m glad you’ve joined this incredible group on Connect – Welcome!
I’d like to share this video, where Dr. Steve R. Ommen, director, Hypertrophic Cardiomyopathy Clinic at Mayo Clinic, reviews hypertrophic cardiomyopathy, sudden death and implantable defibrillators

Paul, with the additional diagnoses (heart failure, mitral valve disorder) what are the next steps in treatment?

Welcome, @jjayc63. As @hopeful33250mentioned, I also hope we hear more from you and get to know you better.

@sheim, I completely understand your anxiety - it’s natural for us to get worried before any procedure! I want to assure you that you are in the best hands. Mayo Clinic has a long-standing hypertrophic cardiomyopathy program – more than 50 years of experience in performing septal myectomy surgery. About 250 people undergo septal myectomy surgery at Mayo Clinic each year. I encourage you to learn more about HCM/HOCM care at Mayo Clinic
– https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

I would agree with your cardiologist that, "they aren't going to waste their time or mine in having me come if they don't agree with him."
Many people with hypertrophic cardiomyopathy (HCM) don't experience significant health problems, and may go undiagnosed because there may be few, if any, symptoms. However, if left untreated, the thickened heart muscle can cause shortness of breath, chest pain or problems in the heart's electrical system, resulting in life-threatening abnormal heart rhythms (arrhythmias), or in some cases, sudden cardiac death. https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

Connect’s alumni Mentor, @cynaburst, has shared these notes from a presentation by her Mayo Clinic surgeon, Dr. Dearnai,
– Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/
You can read more testimonials from Mayo patients in this discussion, and how travel was not a barrier to excellent care https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/

Even tho I've joined and asked a question or two, I've not introduced myself. I'm Sherry, live in Idaho and scheduled for a Mayo trip and surgery the end of June. I have HOCM and was only diagnosed in Feb. However I think it's because I happened to have been seen by a dr who knew what he was doing and seeing. For several years I've had symptoms ...shortness of breath, palpitations, odd EKG's and known heart murmors. Even told I have a thickening heart muscle. but nothing was mentioned about HOCM. As the time gets closer my concerns get bigger and I wonder if I'm alone in that thinking. Other than walking makes me wore out it doesn't stop me; I just need to rest a minute or so... so I wonder do I REALLY need this. I also think, what if I get there, go through the expense (flight, hotel, car rental) and the doctors there say ..."naw you don't really need this" My doctor here says after reviewing what he sends them they aren't going to waste their time or mine in having me come if they don't agree with him. I guess I could say if no surgery is needed I got a forced vacation. Positive thinking right? haha. I do tend to get myself worked up in worry so I'm thankful I can voice my concerns on here.

Hello @jjayc63 and welcome to Mayo Connect!

As you mentioned, HOCM, I am guessing that you are referring to a diagnosis of hypertrophic obstructive cardiomyopathy (HOCM).

As you are comfortable doing so, could you share a little about your experience with this disorder?

For example, how long ago were you diagnosed, what type of symptoms do you have and how is it treated?

Hi all. HOCM w apical too. Here in sunny Arizona.

Hello my name is Paul, I was diagnosed with HCM in 2010, I watched my mother die who also had HCM she was 43. I currently have an ICD and I take nadolol to slow my heart down, was just diagnosed stage 3 heart failure and my mitral valve is also at stage three, I keep a good diet blending veggies and fruits is my breakfast, dinner and supper so I am only on one medication.

My husband had surgery last October and is doing amazingly well

Had surgery in 2009. So far so good. No afib. Still have a slight murmur. Checkups have been good once a year

Dennis

Awesome! so happy that it worked for you. Take care