Hello and new to the group with HOCM diagnosis

Hello Margie, @margieinsb
Welcome to Mayo Clinic Connect. I am so happy you found this site!

I bet it must have come as quite a surprise to find out you had this condition lurking inside your heart!
No wonder you were frightened at first.
I, too, remember thinking I could die at any time...it does something to your psyche when first learning about this...and totally natural to have fear. But we know we are not to have a heart of fear!
You've already found this fantastic place to share with others who have your same diagnosis, so you are off to a good start.
I would highly suggest that you read, research and learn as much as you can about HCM so you can be your own best advocate.

Let's get you started right now!
Here is a link to the Mayo Clinic's Hypertrophic Cardiomyopathy site:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And since you are a "bit obsessed" as you stated, why not read up on this site too. It is not affiliated with the Mayo Clinic, but it has a lot of good information:
https://4hcm.org/
The Mayo Clinic is the world's leading expert in the diagnosis and treatment of HCM. Which brings me to another important suggestion:
Be sure your treating physician is up-to-date on the treatment options available. It's is so super important that your doctor knows about this condition and that you get the best treatment for you as possible.
If you feel uncomfortable about your treatment plan, that leads me to my last suggestion:
At anytime you feel unheard or are not connecting with your physician, do not hesitate to get a second or third opinion. I did, and I think it saved my life!

With HCM, each one of us is unique. No two of us are a like. That means what works for some, may not work for you and vice versa.

So far, it sounds like you are doing all the right things. Healthy, active, balanced and not blaming yourself for getting this or passing it along to your children.

How often is your physician planning to monitor your condition?
Have you had all the standard tests--plus additional tests such as cardiac MRI, chest x-ray, or labs such as Pro-BNP?

Dear Debra,
Thank you for your very kind note.
The Mayo Clinic website has been very helpful and was one of my first online resources.
Yes, I had the Cardiac MRI, no chest x-ray or a lab such as Pro-BNP.
My local cardiologist has been very kind and responsive. She referred me to the UCLA HCM specialist. I had an excellent meeting with him and will be part of their HCM program.
As no specific gene was identified in the genetic test, my cardiologist recommended that my adult sons have an echocardiogram.
Again, thanks very much and best wishes, Margie

Glad you found this site and its good to hear your having conversations with a HCM specialist!
I too had the VUS gene and was told all first line should have ECG and EKG every 5 years till age 60

As you mentioned your very active life style and being asymptomatic thats great! Listen to your body and stay in contact with your team!
Im very active and the obstruction was at the aorta not allowing blood to leave my heart and backing oxygenated blood back into my lungs!
Best of luck to you
And most importantly im glad you have that personal relationship with
The Lord
John 14:6

@margieinsb Hello Margie, I am glad you joined our HCM discussion group, we are all living with this inherited disease. Fellow mentor Debra @karukgirl and invaluable contributor @brumasterj have given you excellent information and assurance. Even though we all have HCM, each of our experiences is unique. You wrote "As no specific gene was identified in the genetic test, my cardiologist recommended that my adult sons have an echocardiogram." Yes, that is true in my case as well. In 2022 there were 123 known HCM genes, my DNA was studied and like you, the "naughty" gene was not among them. Your cardiologist gave excellent advice, my 50-year-old son gets an echocardiogram every 5 years and my teenaged grandson every two years. My dad was short of breath and had a mitral valve murmur starting around the time he was 60, never formally diagnosed with HCM, died of another ailment, but likely passed it on to me. His mother died of a heart attack. HCM? No one knows, family health history knowledge is essential. It is good that you are now calmer, the more you know about HCM, the more you may feel that you own this disease and can actively participate in determining your care.

My Father also died of heart problems and had breathing issues. The Dr's told him it was because he was a smoker. I had a sudden cardiac arrest and was diagnosed as an asthmatic. I went to Mayo in Rochester and was told I was not an asthmatic that I had HOCM. I had alcohol septal ablation surgery. My Cartiologist told me to have all Brothers/Sisters and close relatives to have an Echocardiogram. Well, My one Brother also had HCM. He too had surgery. More relatives need to be tested.

@jachrist
Hello, and thank you for your note. How was the alcohol septal ablation? Will you please tell me more about that? Has it helped you. I have two sisters, and one is elderly and has dementia. She doesn't have heart disease as far as we know. My other sister has had heart problems and two open heart surgeries but no diagnosis yet of HCM. She is seeing her cardiologist soon and will ask him to review her chart in light of my diagnosis.'
I've been referred to the HCM Center at UCLA. I hope it is a good one.
Best, Margie

@walkinggirl
Dear Linda, thank you for taking the time to welcome me. The volunteer mentors have been so kind and welcoming. I feel calmer but I seem to be having a lot of tummy issues. The cardiologist has tried Diltiazem 120 which I tolerated reasonably well but had diarrhea at 180 mg, and then switched me to Metoprolol 25mg, with which I had a lot of gastrointestinal issues.
So I am back to the Diltiazem 120 mg. When I stopped taking the medicines my gastro issues and diarrhea stopped. I am sorry TMI - but these issues have been distressing.
I do eat carefully and exercise, sleep, etc.
Have other members mentioned these side effects?
Thank you.

@margieinsb You were referred to the HCM Center at UCLA, is that the same as UCLA Ronald Reagan Medical Center? If so, it is considered a COE (Center of Excellence) by the Hypertrophic Cardiomyopathy Association (see 4hcm.org) and that means you will be in excellent hands. Here is a list of the COE places from that website: https://4hcm.org/centers/

You may wish to find out more on septal ablation - here is an article from John Hopkins: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/alcohol-septal-ablation. When it was time for intervention with my HCM, the cardiologists both at Mayo and at home determined that a septal myectomy was the route to take with me, the alcohol septal ablation near my mitral valve may not have been as effective.

@margieinsb
Best to You and your family. My alcohol septal ablation helped extremely. Prior to surgery my breathing was very restricted. The surgery was done going through my femoral artery and into my heart in the left side. Naturally there is recovery time like any surgery.
Jim

@jachrist Thank you Jim. I'm so glad your comments about the ablation were very helpful. Do you know if you had a high gradient?
Wishing you all the best. Margie