@karukgirl I really appreciate all you shared, this is so much helpful information. I totally understand that no one here can offer medical advice and really just appreciate everyone's knowledge having gone through different pathways themselves.

I have always been a huge advocate for my health and lead a fairly active lifestyle and make (mostly) healthy decisions for nutrition. My dad passed when he was 46 from a blood clot/heart attack post-surgery and I've seen what can happen from not taking care of yourself for so many years. My goal is to be an active grandparent one day for both of my kids and lead a long healthy life with my supportive wife.

Your points make a lot of sense about not just being a top cardiac hospital, but a top hospital for septal myecotmy. Kaiser Santa Clara is where my referral is within Kaiser for surgery, so at least that's in that one link and I will meet with the surgeons there. Though like you said, they may not be experienced in septal myectomy. I've actually already asked their member services for statistics on how many of this procedure they perform a year at the hospital, in the region, and at Kaiser as a company. They said they'll mail me the information in 30 days or so. Seems like they are holding that info close, but it is critical information for patients to know!

Thanks for your story about your friend in Auburn. They live only about 20 minutes from me, so we're in the same "medical system" with Kaiser. I'm glad to know that Kaiser has approved Mayo Clinic for other patients with other conditions. I am preparing for the battle ahead with them, mainly in a fact finding stage right now to get my paperwork in order to present a case on why I should have this performed through Mayo Clinic.

I just want the best care, regardless of location and that's how I've landed here speaking to all the amazing people in this group.

I have my next cardiologist appointment in mid-April, with a cardiologist at a different Kaiser location for a second opinion. I've been getting a second opinion each time I see my cardiologist as I want to make sure that I am understanding everything correctly and to make sure nothing goes unchecked. I am so thankful that my case (at least as I understand it) isn't urgent, so I have time to figure this out and work on presenting my case to Kaiser on where and why I'd like the surgery performed. I know not many have that opportunity. However, I do not want to wait too long. Already there was increased hypertrophy in my septal wall from one year ago to last month (that was only 10 months between) after reading both my first echo and my stress echo. So I'm hoping within the next two years.

Don't worry you didn't scare me. I totally understand everyone's story is different and the progress of this doesn't present the same for everyone. That sounds like you had a really challenging journey yourself through misdiagnosis to near failure within a few year period. I'm so glad you got the care for this and are here to help guide people like me with your story.

I have read that a lot of people experience the most dramatic symptoms once they hit later 50s and early symptoms (when no intervention was done early). Even my cardiologist said I have a good 10 years before some big symptoms start showing up because we caught this so early. Since I'm fairly young still and very proactive with my health, I am of the mindset to get the procedure while I'm in some of the best shape in my life, so I can continue that way moving forward.

Thank you again for the research links and information. This is all so very helpful as I continue my research and build my presentation to the insurance company on why I feel best out of their network in this case. Otherwise, Kaiser has been phenomenal for me--fairly quick appointments, diagnostics approved and scheduled very quickly, hospital had amazing care when I had sepsis last year.

Thanks again!