Septal Myectomy Consideration

Glad to hear your recovery is going very well! Sounds like you're feeling a lot better. I'm sure you're excited to get on a bike soon.

The first big step is knowing you have HCM! You may choose to get a second opinion as to your timing of treatment options. Are you able to access a Center of Excellence (COE)? We are all different and just as we all have different eyeglass prescriptions specific to our needs, your management of HCM is as individualized. I was diagnosed in my 50's with a new heart murmur and was referred to a cardiologist who happened to know much about HCM. I took Verapamil for many years to make my heart work less intensively. It took to my early-mid 70's when things started getting worse (obstruction grew enough to block blood flow), many years. Cardiologist wanted me to have surgery a few years before I did - turning point was when I reached a crisis. Meanwhile, you may decide to look into genetic testing, persuade close blood relatives to be screened and learn all you can about HCM.

Kaiser was actually really good with my diagnosis. My diagnosis was smoother than others I've read on this forum:

- Ancillary finding of heart murmur while recovering from Covid last year (Feb 2024)
- Spoke to my general doctor about it and he ordered Echo (Feb 2024)
- Echo results showed Obstructive HCM and I was with a cardiologist within 2 weeks (Mar 2024)
- Genetic testing done on me and my kids, offered to family members (Mar 2024)
- Echos done for my kids with no hesitation (April 2024)
- Stress test (Jan 2025) after hospitalization last year from sepsis (Nov 2024)
- Results showed a dynamic gradient that was noted as 90
- Medication and heart rate limits options, so surgery was discussed as an option later
- I reached out personally to Mayo to review my records and Dr Dearani agreed I am a candidate for surgery when I feel ready and if my symptoms persist
- Symptoms aren't life altering at the moment, but noticeable
- Sisters and mom had echos all within the last 3 years due to surgeries and none of them have HCM. Dad passed at 46 years old, so the suspicion is that he had HCM, though he passed from a post-surgery blood clot after bile duct cancer surgery.

RE: Second opinions, Kaiser is more of an in-system network, so you have to use their doctors and facilities. I took it upon myself to reach out to Mayo directly and was assigned Dr Dearani to review my charts.

Unfortunately, no one at Kaiser will support an out of network COE so I've worked with the HCMA to get the closest I can get to within the network, which is the Kaiser Santa Clara cardiology department. I now drive 3-4 hours for my cardiologist in-person appointments and video for non essential appointments. That cardiologist came from Stanford, a COE.

He listened more and offered me the options that make sense with what he sees with my studies. Verapamil was given to me due to being 44 and having fatigue with metoprolol. My resting HR is between 45-52, so we're going to increase dose over the next two months while monitoring HR and BP and then redo a stress echo to see how things are looking. I also pushed to get a Cardiac MRI which he agreed to (although said at this point it wouldn't change his therapy protocol). At that point, if the obstruction is still high and symptoms aren't subsiding, we'll discuss one other medication addition and/or the timeline/outlook for myectomy.

If and when myectomy is being considered, I will explore surgeons Dr. Ha at Kaiser Santa Clara (who used to work at Stanford's myectomy surgeries) and do some more formal out-of-pocket consults at Mayo and CC (both of which will be a longer process for surgery because I'll need to switch health insurance).

I'm extremely low on the SCD risk calculator. I am fortunate that the state of my symptoms and options is early and I have time to work through options. I am also fortunate to have this forum to read of everyone's path to be very well informed and ready for if/when I head more toward that crisis mode, understanding that sometimes you're not there and then sometimes you are out of nowhere.

Thanks as always for your thoughtful input.