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Camzyos treatment location / expertise?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 8, 2025 | Replies (20)Comment receiving replies
@afaith, I am glad to read that you seem to be on the right track to treating your HCM! Yes, too many have unfortunately taken too long to be diagnosed. I am in the Capital District/North Country area of NY and know that both UVM's and Dartmouth's are among the finest medical places in northern New England. As of now, neither of our immediate areas are homes to a COE, that could change in the future. Nevertheless, my cardiologist, just like the two you consulted with, are well-versed in HCM. I was referred to and quickly accepted at Mayo for a septal myectomy (close to my 76th birthday in 2022), when it was essential that the next step take place. My cardiologist did not recommend Camzyos because my gradient was too high. Like @brumasterj, I am an active person; within 6 months I had resumed my former active life. There will be both fear and courage along this journey as the best plan for you takes shape.
Replies to "@afaith, I am glad to read that you seem to be on the right track to..."
hi Walkingirl, Thanks for your post, and yay, so wonderful that you had the surgery and are doing well in your active life.
I feel hopeful to hear another success story. I've been an
active person too, and it's just a different life to have to dial that back in obvious ways.
Thank you for the endorsement of the medical centers nearest me. Glad to hear that! ~And I'm now more aware as I learn more, the individual nature of HCM, and HCM treatment plans. So I can't know the path ahead until I get there; I may want/need to go to a COE. I too could end up having surgery recommended?
Holding space for fear, and courage. That sounds right, and feels helpful to hear. Thank you.
I have a little note of words on this, that work for me, from the Dali Lama:
" If when we get into a difficult situation, our will or our courage lessen, and we fall in to the laziness of feeling inferior, thinking that we could not possible accomplish such a difficut task, this diminishment of will cannot protect us from any suffering. It is important to generate courage corresponding to the size of our difficulties. "
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@walkinggirl, You probably have mentioned this before in another post but curious to what your gradient was that prevented camzyos? My gradient was 48 resting and 122 valsalva