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.

jachrist | @jachrist | Jun 12 9:41pm

Melissa,
Sorry that you live so far away. I know that when I'm at Mayo I see vehicles from several states away and flights bringing patients from all over. Test can also be done locally and sent to Mayo. There are options.
Best to you!

melissa50 | @melissa50 | Jun 12 8:40pm

In reply to @jachrist "Mayo Clinic in Rochester, MN is the best place to go!" + (show)

That may not be feasible for me. I live in SC and trying to find the best place. So far all I've seen if Charleston.

jachrist | @jachrist | Jun 12 6:31pm

In reply to @melissa50 "Hi! I'm new to this and just working on my diagnoses. I still have a cardiac..." + (show)

Mayo Clinic in Rochester, MN is the best place to go!

melissa50 | @melissa50 | Jun 12 6:13pm

Hi, I’m Melissa.
I’m 50 years old and currently undergoing evaluation for hypertrophic cardiomyopathy. My echocardiogram showed severe predominantly basal septal hypertrophy, a hyperdynamic left ventricle (>65%), and a resting LVOT gradient of 82 mmHg with Valsalva. Systolic anterior motion (SAM) of the mitral valve is present, along with multi-valvular regurgitation.

I have a longstanding history of hypertension, which is being considered as a contributing factor, but my cardiologist believes the findings are more consistent with HCM. I’m scheduled for further diagnostic testing, including a stress echocardiogram and cardiac MRI.

I’m here to connect with others, share experiences, and better understand how to manage this condition.

melissa50 | @melissa50 | Jun 12 6:07pm

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

Hi! I'm new to this and just working on my diagnoses. I still have a cardiac MRI and stress echo to have done. My cardiologist is sure this so my diagnoses he says. Nervous about where to fo to get the best care. Really happy to find this group

jachrist | @jachrist | Jun 12 3:01pm

Sharon,
I did receive much improvement after the ablation however I now also have Cardiac Ambyloidosis (Stiff heart syndrome). The outside of my heart is stiff and struggles to pump blood to my brain so I'm experiencing eschemic strokes. There is no medication or surgeries that will correct this.
FYI: I too was a Professor (criminology)
Jim

sharonmann30 | @sharonmann30 | Jun 12 2:21pm

In reply to @jachrist "Sharon, I also have HOCM and had alcohol septal ablation at Mayo in Rochester, MN I..." + (show)

Dear Jim - wonderful to meet you - thanks for your clear response. I'm committed to the alcohol ablation in late August, and in fact, have requested it be sooner. Am on a waiting list.
The plan is the same as yours - it will be done through the femoral artery and I am expecting to spend 4 days in recovery.
It does disturb to hear that you are still short of breath. No improvement whatsoever after the ablation?
Best, Sharon

Debra, Volunteer Mentor | @karukgirl | Jun 12 10:58am

In reply to @sharonmann30 "Hello everyone, My name is Sharon, I'm a professor of music, in my 80s, still working...." + (show)

Hello @sharonmann30, and a warm welcome to you!
I'm glad you found the HCM support group, and I see you already have an excellent response.
Have you had a chance to read up on HCM/HOCM?
Here is a link to a Mayo Clinic article:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-cause
I also found this from the Cleveland Clinic about the ASA (Alcohol Septal Ablation) procedure:
https://my.clevelandclinic.org/health/treatments/22498-alcohol-septal-ablation
Will you be traveling to Mayo Clinic or do you live near by?

jachrist | @jachrist | Jun 12 10:19am

In reply to @sharonmann30 "Hello everyone, My name is Sharon, I'm a professor of music, in my 80s, still working...." + (show)

Sharon,
I also have HOCM and had alcohol septal ablation at Mayo in Rochester, MN
I struggled with breathing problems for many years and was miss diagnosed. I was told that I was an asthmatic but a sudden cardiac arrest proved otherwise.
I still am short of breath but the surgery was necessary. If Mayo recommends alcohol septal ablation, then have it done. They went through my femoral artery for the surgery. I was awake for this surgery and spent 4 days in recovery. Mayo will take care of you.
Jim

sharonmann30 | @sharonmann30 | Jun 12 9:36am

Hello everyone,

My name is Sharon, I'm a professor of music, in my 80s, still working.
I have OHCM, have been struggling with it for four years, tried Camzyos for 1 1/2 years to no avail, and will have an alcohol ablation at Mayo/Rochester in late August.
Are there chat groups? I would love that.
Best to all! S