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Treatment options for returning to high performance career
Hello all, first post to the forums. I have oHCM. Septal thickness of 16-18mm with a provoked gradient of 74mmHG. The anterior leaflet of my mitral valve is elongated and creates a significant obstruction during exertion. Symptoms are about what you would expect. Throat tightness, chest tightness, breathlessness, coughing under exertion, dizziness, some left shoulder pain. I am 50 years old and have been given two options. I can start Camzyos. Or I can do a myectomy with a mitral valve repair. I am a police officer and, prior to my diagnosis, was on patrol. My questions are: has anyone had either treatment and returned to full duty with a career in policing or similar profession? My concerns are: Camzyos has not been around long enough to know what happens after being on the med for 20 years. Also, it does not rule out surgery at a later date. And it’s entirely possible that I do not return to duty on the med. With a myectomy, there is a long recovery time, but the result could be more permanent and a return to duty is more possible. That is, assuming there is not a complication with disrupting the electric function of my heart. Any thoughts or anyone with experience relative to mine?
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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?