HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

jjayc63 | @jjayc63 | Apr 24, 2019

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

Teresa, Volunteer Mentor | @hopeful33250 | Apr 25, 2019

In reply to @jjayc63 "Hi all. HOCM w apical too. Here in sunny Arizona." + (show)

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?

sheim | @sheim | Apr 25, 2019

In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)

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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 25, 2019

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/

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 25, 2019

In reply to @thehound572001 "Hello my name is Paul, I was diagnosed with HCM in 2010, I watched my mother..." + (show)

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?

lindykusik | @lindykusik | Apr 25, 2019

Hello, I'm scheduled for an alcohol septal ablation in june, 2019 (I"m in Milwaukee, WI) Just wondering what the recovery is like?

lisa7 | @lisa7 | Apr 25, 2019

In reply to @sheim "Even tho I've joined and asked a question or two, I've not introduced myself. I'm Sherry,..." + (show)

You sound like me! I was diagnosed with HOCM in 2012, and had a septal myectomy at Mayo Rochester, MN in November 2014. Mayo saved my life. I had been tried on many meds, and I have a pacemaker/defibrillator. I’m sure the Mayo will evaluate you extremely carefully, as they did me. This surgery alleviated many of my symptoms. They are very careful and thorough. I think it’s very Natural to be nervous and apprehensive. I had been evaluated at several major medical centers, The only thing they could offer me were medication adjustments.
I am very thankful I had the surgery. My symptoms had become very severe. I am a registered nurse, so I was very familiar with where my condition was taking me.
Do you have a pacemaker defibrillator? You may want to discuss that with your cardiologist.
I wish you the best of luck, and I’m sure you’ll be in a very fine care at the Mayo.

sheim | @sheim | Apr 26, 2019

I do not have a pacemaker or defibrillator and am hoping this will prevent me from having to have one. Am also hoping I can get off the Disopyramide. That stuff is AWFUL. I've read there is a Rx to help with the dry mouth, nose, eyes but ....who wants to add yet another medicine when I'm anti Rx in the first place. I'm normally even anti doctors but when a 2nd cardiologist read all my reports and said he agreed I decided maybe mine knows what he's talking about ....haha. The second guy also said it looks like it's possible I'll be referred for a sepal myectomy and if I were his patient I'd ONLY be sent to Mayo. When I had a follow up with my doctor and he suggested the surgery and also said Mayo I did feel better. He even said there is a doctor in Boise who said he would do it but he didn't recommend it. Then told me the stats. WOW! I had no idea how few of these are done and totally understand now why places like Mayo and Cleveland are the places to go.

thehound572001 | @thehound572001 | Apr 26, 2019

As HCM effected anyone digestion?

thehound572001 | @thehound572001 | Apr 26, 2019

In reply to @kanaazpereira "Hello @thehound572001. I’m glad you’ve joined this incredible group on Connect – Welcome! I’d like to..." + (show)

Well I guess my next step would be heart replacement, my obstruction is lower down so a myectomy is not on the books, my doctor does the NVO2 test on me to seen what my oxygen levee are and my last 1 came in at 24, 14 they do transplant is what they are telling me.