I totally agree too. I was diagnosed with HOCM about 2 months ago. I was about to go with my local cardiologist who is certified for Camzyos - but has only worked with 25 patients so far. So I went to John Hopkins for a 2nd opinion. My local guy was about to move right ahead with Camzyos.
I live 2.5 hours from JH. JH picked up an M-spike in my blood which can be correlated with multiple myeloma- and as a result are testing several different things to be sure we will be treating the right thing. MM can deposit proteins in your heart that can cause the obstruction which is not treated the same way as HOCM at all. Not sure quite yet what is going on since I am still in the testing phase. Take note: my very lovely local guy could have put me on Camzyos without knowing that something else was going on. That something would have to be treated by oncologists - so I do hope that I “just” have HOCM. Going to JH may saved me from treating the wrong thing and having a cancer advance in the meantime!!! So now, the driving seems like nothing! My spouse and I just try to make the trip fun! I am at JH right now for a few tests and back again in 2 weeks for a heart biopsy! Last night, we stayed at a beautiful hotel on the harbor and had a fabulous dinner out. I don’t know your circumstances but wanted you to know my story! The heart is an intricate thing and central to health. I know I am in great hands at JH.”