HCM-ers: Introduce yourself or just say hi

I assume the stiffening of your heart is on the outside of your heart, and you also have HCM. If so, this is (Cardiac Amyloidosis) or stiff heart syndrome. I have HOCM and had alcohol septal ablation, but I too now have stiff heart syndrome. I also just had a ICD implanted. (I have a history of sudden cardiac arrest) I also have another appointment at the end of July for right heart catheterization to check my right chambers. Naturally, I too am short of breath.
I continue to maintain a positive attitude and I too am 70 years old.
As for what can be done? Keep listening to your Cartiologist and have faith. You are not alone!!
Jim

Hi! I am 70 years old, and I was just told of having stiffening of the bottom of my heart. I have pain and out of breath, feel my heartbeat. What am I to do now?

I just found this connect group and I’m encouraged to see so many people willing to share their experiences and knowledge. I was diagnosed with HOCM about seven years ago. I’m 71, female, and I’ll share more later. I’m thankful for everyone in this group and for Mayo Clinic.

Welcome to Mayo Connect @randimarie! I am so glad you found this site, and you will be too because there is so much information you can learn about HCM and HOCM here on Connect.
I applaud you for trying to learn as much as you can about HCM. I always think it is best to know what you have and start learning as much as you can.
Have you read this:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
This is from the Mayo Clinic and features Dr Ommen, who is the top doctor in the world on all things HCM.
I was diagnosed with several different heart diseases before I was finally diagnosed with HCM. I read as much as I could and found comfort after signing up for Mayo Connect because I was not alone.
I had just been diagnosed and found out that same day I needed to have open heart surgery. I was so not prepared for that information! Camzyos was not an option for me as they were in clinical trials, but I feel like having the septal myectomy, no matter how scary it sounds, was the best thing for me. I do not like medications and taking them for life did not sound appealing to me.
We are all different and what works for some may not work for others.
Tell me a little about you...you mention trying to change your diet and start walking. Are you healthy other than the HCM?
Before I knew what I had, my feet would swell like I had heart failure, so I cut out as much salt as possible. I did not give up my one cup of coffee per day. That was not an option! The coffee didn't affect me negatively. I learned by trial and error that with HOCM you can have good days and bad days. Eating large meals had a terrible affect on my heart. Some days I could walk six miles and only have to stop four or five times. Other days I had to stop a dozen times before I did one mile. It didn't make sense.
Is your cardiologist familiar with HCM and treatment options? Are you close to a COE (Center of Excellence)? Has anyone else in your family been diagnosed with HCM?

Hello. I'm Randi, and just diagnosed with HCM yesterday, June 28th. I'm nervous and frankly, scared. Trying to learn all i can to better myself. I'm trying to change my diet and start walking. I'm going to really miss coffee! Anyways, any and all help, tips are appreciated! I look forward to getting to know you all, we are in this together!

Hi,am Hollywood50.
On Camzyos 10mg
ICD IMPLANT
All echos are good over a year now.

Hello @karindee, and welcome to Mayo Connect. You found a great place to share your story and learn about others too. Maybe this article from Mayo Clinic will be helpful?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
You have already got some responses, so let me add mine: the answer? It depends!
We are all different and each one may be affected by HCM in different ways. It all depends on your health status and how active you are now. In my case, being stubborn and not a very compliant person, I walked, hiked, danced, did yoga and rode my Harley as much as I could. Then as my HOCM progressed I was not able to do much of anything I truly enjoyed anymore and ended up at the Mayo Clinic, where I had open heart surgery (septal myectomy) nearly four years ago.
How long have you had symptoms of HCM? What is your cardiologist planning to do to treat you?

You are at higher risk of developing Afib. Look into the causes of it and modify your lifestyle accordingly.

Talk to your doctor about lifestyle changes. There are so many differences among people with HCM. When I was first diagnosed I was advised to "Keep on doing whatever you are doing." As the condition progressed, I slowed down and was monitored more closely. Good luck!

Yes, you may have to. Shortness of breath could be a factor. You may also need surgery such as alcohol septal ablation. Also family members will need to be tested by having an echocardiogram. If they are negative, then they need to be tested every 5 years. Also you could get cardiac amyloidosis (stiff heart syndrome) which is stiffening to the outside of your heart. Take your blood pressure everyday since your BP can be affected.
Best of luck to you!
Jim