HCM-ers: Introduce yourself or just say hi

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?

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

Had surgery @ Mayo in July. What is the Center of Excellence? Also I know someone who survived a widowmaker heart attack and doing well. Where does one find written info about the importance of getting emotional support to address the anxiety created by that event.

It looks like this is your first post, so thank you for sharing your story @joan79.
And that is quite a story you have. Six decades with no trouble and then all sorts of things went wrong. I'm glad you have been able to find value in Mayo Connect and that you want to know as much as you can to be your own best advocate.
Do you also have HOCM (Obstructive Hypertrophic Cardiomyopathy) What is your next step? Have you been seen by a Center of Excellence with any of your opinions?

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.

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?

Sure, den01, I just looked at my gradient results back to 2021.

Remember, each case/patient is different, but for what it's worth:

I was asymptomatic until June 2024. Resting peak LVOT gradient was 173mmHg in April 2021 and 179mmHg in February 2023. I started on metoprolol in 2023, and tested 127mmHg in January 2024. (No results with Valsalva maneuver reported for these tests.)

Symptoms started (severe shortness of breath, sense of pressure in chest) in June 2024 at age 72. Tested 142mmHg in July 2024 (227mmHg with Valsalva). The SOB greatly improved after a few weeks, when a chest infection cleared up, but sense of pressure in chest persists to today.

I started on 5 mg mavacamten (Camzyos) in October 2024. Tested 61mmHg in November 2024 (123mmHg with Valsalva); 18mmHg in December 2024 (38mmHg with Valsalva); and 14mmHg in January 2025 (32mmHg with Valsalva).

So, the gradients are clearly going down, but I still feel pressure in chest, and SOB when doing even mild unaccustomed exercise (but no undue SOB when doing my usual aerobics or moderate weight-training in controlled circumstances at the gym).

I may be increasing to 10 mg mavacamten soon (meeting with doc later today). I am still strongly considering septal myectomy depending on how things go over the next few months.

Hi,
I am so thankful for everyone on here sharing their information. I am 60 and was diagnosed with HOCM in 2018. My cardiologist said my body was managing it so no treatment necessary. Then, in 2022, he put me on Verapamil which made me very tired because I have historically have a low heart rate. Then, we tried 1/2 dose of metropolol, it helped until mid 2024, my GP said my heart murmur was stronger. I had also noticed more shortness of breath on stairs and just overall tiredness. So, I scheduled an ECHO in Sept, and my pressure gradient was 69 mmHg at rest and 100mmHg Valsava. I was recommended to go on Camzyos and began on Nov 9th at a 5mg dosage daily.
I have had two echos since and my last one was 18mmHg at rest and 69mmHg Valsava. My cardiologist said after the third, if things are going well, he would like to increase the dosage. After 4 weeks of being on, I do feel less stress in my chest and I feel like I am thinking clearer. I didn't have a lot of symptoms but the difference is noticeable. I do not quite feel totally better yet so I am hopeful, I have improvements are still coming.

I do wonder if it would be better to do surgery rather than a lifelong expensive drug so any feedback would be appreciated. Anything I should not do while on Camzyos?

A little more history, for several years, when I eat late at night, or have something with a lot of sugar content, I would have strong palpitations that would keep me up. Otherwise, I have been very healthy for my life, active, worked out, weight lifting, low bp, low cholesterol, etc.
Another question, does this cause tinnitus? I have high pitched ringing in my ears that seems to be getting worse. Any help from anyone with a similar situation, please share. Thank you

May I ask what your gradients are?

Looking back, I too, feel this has been working on me a long time. Have had SOB, chest heaviness that extends into my back, and fatigue for a really long time. But has gotten much worse over the last year.