HCM-ers: Introduce yourself or just say hi

First time posting, but have been following the forum since my HOCM diagnosis a year ago. I have probably had symptoms throughout much of adulthood now that I look back. But out of nowhere I started having shortness of breath that kept me from doing things such as dancing, hiking or even walking. 6 months later it was confirmed. Doctor prescribed Verapamil, which seemed to work well enough that I started light exercise again. A few weeks later I left the Y and ended up in ICU with Cardiogenic shock/myocardial infarction. Since that time, I have meds changed, dosage increased and each time I feel like myself for up to 6 weeks, then right back to the same cycle. At my last appointment, my doctor, who is Camzyos certified, said that my next visit we would discuss Camzyos and/or surgery. This dosage of Metoprolol I was on lasted for about 6 weeks. Again, shortness of breath and can't take short walks. I am very open to surgery, but probably want to try Camzyos first. Trying to gather the facts.

Not exactly the same experience, frankkylerobinson, but some similarities. I'm 72, and was told I had a heart murmur when in my 20s or so. Active life bicycling, hiking, skiing, swimming, etc. Diagnosed with hcm about 5 years ago only because thickening of septum (heart muscle between left and right ventricle chambers) was detected by echocardiogram, then MRI, but I stayed active and felt no symptoms till last summer when shortness of breath hit. My cardiologist said that from my high gradients and other measurements he would have expected symptoms years earlier.

So now I've started mavacamten (Camzyos) (moderate results so far) and am considering septal myectomy surgery.

My point: It sounds like for you, if competent doctors are "just" collecting data at this stage that may be appropriate for now. Each case is different, and judgment calls need to be made about when, and how, to intervene.

I have confidence in my doctors, but since the summer I have found it helpful to ask a lot of questions and self-educate on line. Also, I got a second opinion from a recognized expert.

This site is great for hearing about others' experiences, and I recommend the HCM Association for a wealth of information. Here's their url: https://4hcm.org

I have a history much like you from age 18 with heart murmur. No symptoms for 6 decades until uncontrollable BP and SOB. Had opinion in spring 2024 after cath was for replacement of calcified aortic valve with TAVR procedure. Second opinion after TEE advised open heart surgery for enlarging aortic root, aortic valve replacement, severe sub aortic stenosis, with basal septal ridge, septal myotomy/myectomy. Third opinion agreed with open heart surgery. Knowledge is power and trust your instinct. Amazing what value these postings have to others.

I have a history much like you from age 18 with heart murmur. No symptoms for 6 decades until uncontrollable BP and SOB. Had opinion in spring 2024 after cath was for replacement of calcified aortic valve with TAVR procedure. Second opinion after TEE advised open heart surgery for enlarging aortic root, aortic valve replacement, severe sub aortic stenosis, with basal septal ridge, septal myotomy/myectomy. Third opinion agreed with open heart surgery. Knowledge is power and trust your instinct. Amazing what value these postings have to others.

Hi Connect HCM-ers
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

Hi Colleen,
I have been living with HCM for several years now and really noticed a decrease in my energy and ability to breath especially when walking up hill. I play hockey regularly and the last year or two I have shortened my shifts because of lack of breath.

I am a woodworker and photographer and find now wearing a mask doing woodwork is exhausting after a few hours as the mask restricts the air I am getting into my lungs.

I am planning on doing less live edge woodwork (which I Love doing) and doing more photography where your outdoors with wildlife which is also very exciting.

I was writing to you today to see if there are any cures or operations that I can get so my breathing gets back to normal so i can continue to do the physical activities I enjoy?

John

Hello @johnlich, and welcome to Mayo Clinic Connect.
I am glad you are here and shared your story.
Have you taken a cruise around Connect and read up on HCM? Here is a link from the Mayo Clinic that has some good information about HCM both diagnosis and treatments:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204
And here is a link to the Hypertrophic Cardiomyopathy Association:
https://www.4hcm.org
HCM can lead to HOCM, or obstructed hypertrophic cardiomyopathy. Only your cardiologist or HCM specialist and you can decide what the best course of treatment is for you. For some Camzyos is a place to start. For other beta or calcium channel blockers help with symptoms, and for some, like myself, open heart surgery to remove the blockage is the treatment.
It seems, based on my experience and opinion, that many people with HCM progress to HOCM and that is when your quality of life goes south. Once you are no longer able to do what you used to with ease and find the most routine and mundane activities cause you to gasp for air and your heart races and you have chest pain...that is usually when we seek treatment, because...well...because we can't do things we love any longer.
When do you plan to see your cardiologist? Are they up to speed with Hypertrophic Cardiomyopathy? That is super important. And you need to also become as educated on your condition as possible so you can be your own best advocate. Sometimes it takes a second opinion or even a third opinion to reach the right place for treatment. It took me three opinions, and the last one with at the Mayo Clinic in Rochester. They truly are the best in the world for all things HCM.
You sound like a super healthy person, so no wonder it is so frustrating to lose the ability to do the things you love, and to enjoy doing them!
Do you have plans to see your doctor soon?

Welcome @mrsblueskies, and I am glad you made your first post!
I was a stalker on Connect too before I posted. I read every post I could about this HCM/HOCM stuff, and read everything online I could google!
Your journey sounds like so many others, including mine! It is so interesting that we all seem to have some things in common.
I like that you are trying to get as much information as you can before you decide with your doctor the best course for you. It sounds like you are active and healthy otherwise, which will be to your advantage with open heart surgery or Camzyos.
I was on multiple meds before I knew what I had. My cardiologist had misdiagnosed me with four or five different conditions and it took going to two different COEs (Center of Excellence) before the true culprit was determined. I had a murmur most of my adult life. And like you, looking back I can recall issues that may have been HCM but never addressed. It was as if we just "walked it off" like when we were kids.
When your HOCM begins to take away the things you love to do, like hiking, walking and dancing...you are faced with decisions. Only you know what is right for you and going forward you will be armed with information and ready to take this on!
I had open heart surgery. Camzyos was not an option due to clinical trials. Minimally invasive myectomy also was not an option due to location of my HOCM. So I faced the surgery with fear and trepidation, but have strong faith that brought me through. And the Mayo Clinic!
All I knew was I did not want to live like I was. I could barely do anything I loved without gasping for air, wild heart racing, debilitating fatigue...and all the other symptoms of HOCM.
I have never regretted having surgery. It gave me my life back and I no longer need any medications except one 81 mg aspirin a day.
Have you had a chance to read the Camzyos group posts? When do you see your doctor next?