Treatment options for returning to high performance career

I am in a similar position, newly diagnosed last week. I am very interested in hearing others experiences.

Good afternoon...I started on Camzyos in October. I am in a highly demanding career...former school district Superintendent and transitioned to a training function teaching principals to become Superintendents, conducting evening workshops in conflict resolution with school boards and leading searches to fill administrative positions. Job requires being "on", public speaking and working many extended days.
The med has reduced my gradient and my cardio specialist has not brought up myectomy although
I expect it could be brought up at any time if the med stops responding. The difficulty is the fatigue factor. I sleep eight hours straight through but wake up exhausted. I dress up, paint on my face, get going and hope for the best. I'm 74. I decided on the med because I'm older and less worried about the impact twenty years from now if I should be blessed to live that long. Rigorous surgery worries me as I am a long-standing diabetic (under control but still worrisome). I'll stay with the med as long as the doc prescribes and maybe one of the competing meds might be better for me in the future. We have options and science evolves every day...
We have hope...tackle each day...push through as you can...say your prayers and surround yourself with good people, places and adventures. Blessings to you, Craig and Eileen

@eileen6157 @craigbeach Welcome to both of you! Here on Connect we share experiences in living with HCM and for each participant, there is a unique path forward. I am glad @christine270 shared her experience and it's so, so encouraging to read that she has incorporated what she needs to do in order to live her full and busy life. Yet, she's open minded to the fact that things can change and she will deal with changes as they occur. That's what we all aim for. Thank you, Christine for this and the other posts you have contributed.

First, we encourage people to learn all they can about HCM. Knowing as much as possible helps us understand what is happening and that knowledge helps us generate questions for out doctors. Here is a link to help you get started: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. Here is another that explains treatment options: https://www.mayoclinic.org/vid-20367992 (Dr Schaff was my surgeon in the second link.)

To share my experience, I was diagnosed in the very early 2000's. I was asymptomatic until one day in Feb 2022 I was not. My left ventricle wall had been monitored with echoes yearly and my excellent cardiologist warned me that this was worrisome to him. I had been taking Verapamil, a calcium blocker since diagnosis. He suggested surgery for several years and I refused to consider it. Had a syncope on that day in Feb 2022 and in July 2022, traveled from Upstate NY to Mayo in Rochester. I was 3 weeks shy of my 76th birthday when I had a septal myectomy. Ablation would not have been as effective, I will never, ever regret the surgery. At that time Camzyos was in study, now available, and now Myqorzo is under study. I had been very active at the gym, walking, biking etc, so recovery went well and much easier than I ever dreamed it could.

I encourage you to read the dozens of comments in this HCM discussion. I also encourage you to receive care at a COE (Center of Excellence) and to look at the Hypertrophic Cardiomyopathy Association website 4hcm.org. I encourage you to schedule an intake call, these people are experts in guiding us big-hearted people through their journeys. You and your heart deserve the very best care possible to lead your life going forward. I am a Face of HCM on their website - Linda with the red hair standing in a boat.

How did each of you discover that you had HCM? How has it impacted your life? HCM is inherited, have other family members been identified with HCM (my dad was undiagnosed, but I am 99% sure he had it)? Craig, do ask your doctor about returning to duty, he/she knows your unique medical situation. Please be open to the possibility that your work life may change, have you discussed this matter with your superiors? Eileen, what is the next step for you on this HCM journey?

Up to you on the choices, I'd personally probably try the medication route before surgery. I also found massive relief and help, by accident by starting Ozempic, now with my meds I feel better than ever, but it hasn't changed or fixed my heart, just the symptoms. I'm hoping to move forward someday here and hope I'm a candidate for camzayos as I don't think surgery is the best option for me.

Thank you, I have done so many deep dives it’s probably over kill. You can probably guess, given my career, that research and knowing everything I can is a thing.
I just got back from a trip to Scottsdale where I met with Dr. Shipman. When I asked him about the options and chance to return to work fully he seemed hesitant to say it would be anything other than difficult. My job requires driving 100+ mph through traffic, chasing people, fighting one or more people, handling firearms in high adrenaline situations, and all of that is while wearing 30lbs of gear. He just isn’t sure. I currently take 240 of Verapamil and see some relief. Although, under exertion, it does not keep up. Heart rates of 130 while changing the sheets on the bed are a regular thing. I would like to think a septal myectomy would be the fix and that after rehab I would be back to hustling, but Dr. Shipman really just didn’t want to make promises, which I completely understand. The conversations with my bosses will take place this week. We will see how that goes. I was just curious if anyone on the forum has been in a career with similar physical demands and done either treatment and what their experiences were. I’ve had to check my reality multiple times over the past couple of weeks, and it has not been easy. My identity as a protector and being that rock has been challenged. And I don’t like it. However, I was told that I will be around for my family and that my risk of death is low. So that’s the big take away. Life altering? Yes. Life limiting? No.

Just want you to know that I appreciate you and what you go through every day, every moment to keep us all safe.
Blessings, gratitude and all the best to you!

@wildtwinsfan Hello, I believe this is your first posting on Connect - welcome! Please be aware that we are here to learn about the experiences of others, as you shared yours, and we do not offer medical advice. With HCM, we are all so different and therefore, medical protocols are all so different as well. It is most important to receive care at a COE (Center of Excellence), or as in my case because I live at least 4 hours away from one, from a doctor who has been trained at a COE.

Please learn all that you can about HCM, Camzyos and surgery on your own so that you can know better what your doctor says, ask questions you may not have thought to ask and arrive at an educated decision with your doctor for future treatment. I have found that people taking Camzyos have one of three results: it does absolutely nothing for them, it's a miracle drug or it works for a while and then does not work.

Here are links to help you get started in becoming well informed about HCM: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 and https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204 and https://www.mayoclinic.org/drugs-supplements/mavacamten-oral-route/description/drg-20534017

May I also suggest looking at the website of the Hypertrophic Cardiomyopathy Association website 4hcm.org and scheduling an intake call (red box on upper left). They are truly experts in helping people navigate their journey in living with HCM.

Why do you not think surgery is the best option for you? What has your doctor suggested? How did you learn that you have this inherited disease?

@craigbeach I was glad to read in your response that you seem to have a firm handle on the fact that "I will be around for my family and that my risk of death is low. So that’s the big take away. Life altering? Yes. Life limiting? No." While we are so fortunate to have people like you keeping us safe and showing courage each day in dangerous situations, you are thinking (check my reality) about how your HCM impacts your role as a team member with others counting on you. You are looking at the big picture for sure. ((HUG))

You went to Mayo in Scottsdale; you are in good hands! Dr Shipman's biography tells us that he is well versed in HCM as well as other heart issues. Excellent! Keep us informed of your experiences so we can all learn from them, too. BTW, for the few months between when my HCM no longer asymptomatic and my septal myectomy, I was taking large doses of Verapamil twice a day. No amount of Metamucil and high fiber helped one of the side effects. Glad that I did not need that BP medicine after surgery.