HCM-ers: Introduce yourself or just say hi

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

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

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.

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

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.

I progressed from LBBB to periods of tachycardia and Wenkebach to atrial tachycardia with PVCs and tachycardia of 140 to 150 alternating with 3rd degree heart block in 1 year. They put in a dual chamber pacemaker after the heart MRI showed no scars on my heart. I have been on Metoprolol 50 twice a day since April. I opted for a myectomy as I don’t like the black box warning with Camzyos. I feel more comfortabke risk wise with a myectomy. My myectomy is scheduled in October at Johns Hopkins hospital. They will do a repair or possible replacement of my MV with a cow valve plus a singie vessel bypass of my RCA that is 70% blocked. After reading your comments, I wouldn’t be surprised if my pacemaker gets replaced with one with a defibrillator.

Thank you for your answer. Are you actually sleeping in your recliner? I saw some people use wedge pillows in bed with a lot of other pillows. My biggest concern is not placing too much stress on my chest incision getting in and out of bed. I like that some people are wearing a post op surgical vest. I’ll check with my HCM doc. Thanks again

AWANA
That is a question for your doctor. Perhaps when you have an evaluation at Mayo.

Hi. Just diagnosed by local physician with apical hypertrophic cardiomyopathy and so am scheduled for evaluation work up at Mayo. I am 77 years of age and have been a marathon runner but having more shortness of breath which lead to beginning the assessment that discovered this dx. I want to keep running but also want to be safe. Can I still exercise with this condition as tolerable?

I feel fine. I never had any symptoms( at least not recently)but within 6 months my Atrial pacing percentage shot to 53% and my ventricular pacing percentage shot to 22.9%. I suspect I have a intra hisian delay as my MVP mode switches are exceptionally long — 440ms during the night and 340 ms during the day. I am a retired NP so I have some understanding of what’s going on. Additionally, I have uploaded my Medtronic auto download reports to various AI platforms and so have a much deeper understanding of these reports, which are pretty complex. My electrophysiologist is very good but since the incidence of HCM is 1 in 500( not that rare) and those that require pacemakers represent 10-12% or 1 in 5,000 we’re talking about a relatively rare group. Almost all of those HCM patients with pacemakers have single level conduction disorders, that makes my condition vanishingly small. All of the AI platforms including Chat GPT ( which I have a subscription ), Claude, Gemini, and Copilot agree my case would be very interesting to Mayo. I will wait for my next Medtronic auto download and echocardiogram scheduled for 1 October. If they both demonstrate progression I will ask for a referral. My case is further complicated by my very vigorous fitness regimen which has really increased my Vagal tone. I always had problems with upright exercises ( Nordic Track, Elliptical) causing dyspnea but tolerate a water rower very well, probably because of increased preload and reduced afterload. Anyway, all these factors plus my age of 74 make my case unusual. However, I understand that since Mayo is a high volume HCM center they may have encountered a similar patient.