HCM-ers: Introduce yourself or just say hi

No, the recliner sleeping was temporary till the incision healed. I can't
sleep on my stomach because the device is in the way. I sleep on my side.

Hi awana,
I am an 81 year old, active woman and was diagnosed with Apical Hcm at 78. At that time I had no symptoms other than palpatations. After diagnosis, I was able to get an appointment in the Hcm clinic at Mayo, Rochester. It is a wonderful place and I am certain you will be reassured that you not only can but should exercise. What exercise that is will be discussed with your Mayo cardiologist. Exercise is not often restricted. I don't run, but I do walk 2 1/2 to 3 miles a day and also do upper and lower body strength exercises several times a week. Six months after my diagnosis, persistent Afib presented its ugly self and that is the only struggle I have really had. Took six months of working to control it. Am now on an antiarrhytmic drug which contols it and keeps me in sinus rhythm. Am hoping it continues to work. Even when I was in constant Afib with heart rates that would go as high as 170, I was able to continue my regular activities although I had much fatigue. So, I believe your worries about exercise may be unfounded. Good luck and I hope you find Mayo Clinic as wonderful a place as I do. I just had my yearly visit yesterday and my cardiologist makes me feel so good about how I am doing.
Eileen Owens

Welcome to Mayo Clinic Connect @awana, I am glad you are here and are scheduled to be seen at the Mayo Clinic.
Thank goodness you are so active, because be healthy otherwise will help you as you learn more about this new and unwelcome condition you have.
As to exercising with hypertrophic cardiomyopathy, apical or otherwise, I would definitely ask your cardiologist about what you can or cannot do.
https://pubmed.ncbi.nlm.nih.gov/37195701/
There have been studies suggesting that vigorous exercise in patients with apical HCM show no difference in sudden cardiac death, but the words "sudden cardiac death" mentioned in any sentence should have warning bells going off in your head!
HCM or its progressive form, HOCM, the obstructed stage, is nothing to mess around with. Since you are newly diagnosed, I'd be making a list of questions to ask your doctor.

I posted some more information below to read if you like. It's always best to learn as much as you can so you can be your own best advocate. Having knowledge of what is living inside your heart will help you and your cardiologist decide the best course of treatment for you.

It must feel overwhelming just learning you have this. And it is not easy to accept you may not be able to do some of the things you love...like running! I know I was very sad about not being able to hike, run, walk, dance. All the things I loved so much.

When do you see your doctor next?
Do you have your questions ready to ask?
Do you have an appointment with Mayo Clinic already scheduled?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And this from online:
**Apical hypertrophic cardiomyopathy is a rare heart condition where the muscle at the bottom of the left ventricle thickens, making it harder for the heart to pump blood. Symptoms can include shortness of breath, chest pain, and heart palpitations, but some people may not experience any symptoms at all.
Healthline Mayo Clinic

Overview of Apical Hypertrophic Cardiomyopathy
Apical hypertrophic cardiomyopathy (aHCM) is a rare form of hypertrophic cardiomyopathy (HCM) characterized by the thickening of the heart muscle at the apex, or bottom, of the left ventricle. This condition can make it harder for the heart to pump blood effectively.

Symptoms
Symptoms of apical HCM may include:

Chest pain
Shortness of breath, especially during exercise
Heart palpitations
Dizziness or light-headedness
Some individuals may not experience any symptoms at all.

Causes and Risk Factors
Apical HCM is often linked to genetic factors, with many cases arising from inherited gene mutations. It is more common in Asian populations, particularly in Japan, where about 25% of HCM cases are apical. In non-Asian populations, the prevalence is around 10% or less.

Diagnosis
Diagnosis typically involves:

Medical History Review: Assessing personal and family medical history.
Physical Examination: Checking for symptoms and heart sounds.
Echocardiogram: An ultrasound test to visualize heart structure and function.
Complications
Potential complications of apical HCM include:

Atrial fibrillation
Ventricular arrhythmias
Sudden cardiac death
Stroke
Management
Management strategies may vary and can include lifestyle changes, medications, and regular monitoring by a healthcare professional. In some cases, more invasive treatments may be necessary.

Thanks so much for your kind and reassuring message. We sound very similar. Not too many of us at our age able and blessed to be as active. Bless you too on your health journey

Thanks so much for this helpful information. My appt at Mayo is early December and yes I have a very long list of questions. Thanks again

Hello and Thank you for your encouraging reply. I am having surgery at Johns hopkins hospital. I was actually a nurse there before i retired. I worked as a PACU /critical care nurse for many years in NYC but of course I took care of patients in hospital beds so didn’t see how they did at home. Thanks for the tips on bras and info on recliners. I’m going to order a wedge pillow so I’m able to have my head elevated without an electric recliner. Thanks again!

I am Ellen05121941.
Age 84. Diagnosed HOCM 2008, Born with it. live in small Arizona town with rural hospital. not much support here. Out of breath even with one block walk. Current interventional cardiologist recommends Camyzos. Very expensive, does it help? Phoenix Mayo not available with current insurance, need to find different plan or maybe original Medicare. Comments please,

Sorry to hear your insurance is not accepted at Mayo! Yes camzyos is expensive but your prescribing team should be able to help in finding ways to make it very affordable. Like $10.00 a month affordable! Yes camzyos does work so i hope ykur able to find a cardiologist that is at a COE
Good luck with everything

Hello Ellen @evw, and welcome to Mayo Clinic Connect. Connect is here to do just that...connect you with others who share your same condition and allow you to feel support.
I know what you mean about not having much support with HOCM...when I first found out I was so surprised, didn't know what it was, could barely spell it and had no one to talk to.
That all changed when I found Mayo Clinic Connect.

Have you had a chance to poke around here on Connect? There is a Camzyos group here that have a lot of information they have shared.
Here are a couple of links to the Camzyos folks:
https://connect.mayoclinic.org/comment/1370280/
https://connect.mayoclinic.org/comment/1227383/
And here is a link to the Camzyos site:
https://www.camzyos.com
You can also stroll through the pages of Camzyos questions and answers by typing in "Camzyos" in the search bar at the top of the page. There are lots of Q &A there!

Don't get discouraged, this could be a frustrating process...but with a little help from your cardiologist and your new friends here on Connect, hopefully you will get to the place you need.

Camzyos is a miracle for some, and for others does not work. That's because we are all unique and no two of us are alike.
You would do well to learn as much as you can so you can be a better advocate for yourself and help with decisions about your treatment.

I am not an expert on insurance or Medicare, but I do believe Mayo Clinic takes Medicare.
You could ask those questions about insurance by contacting the Mayo Clinic here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us
Well...I sure gave you a lot of homework, didn't I!
I don't want to overwhelm you with tons of information, so just take your time and read through some of this and hopefully you will find something that helps you.
When do you see your doctor again to discuss treatment options?

@colleenyoung
Hello. Hubby was to start Camzyos but was diagnosed now with Otolaryngeal cancer. He will need radiation and a few chemos. holding off on starting Camzyos now and that really sucks. Wondering how his treatment will affect his HCM