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Why Camzyos instead of surgery?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (44)Comment receiving replies
@joycehocm, you have gotten some great advice from some wonderful members. We were all new here on Connect at one time, so don't fret about the newbie status!
@boatsforlife paints a pointed story about his journey and his fear of open heart surgery. No sane person would want open heart surgery! But for some Camzyos is not an option. Like @walkinggirl and myself. I was terrified, but had faith in God that I was lead to Mayo Clinic for a reason. I am so very grateful for the opportunity to be treated by the best surgeons and doctors and nurses and housekeepers and lab...well everyone! at the Mayo.
This is the link @boatsforlife mentioned. There is a lot of great information there:
https://4hcm.org
The suggestion for second opinion is also a sound idea. This is your life! And you deserve to know all you can and be the best informed HOCM'er out there!
Replies to "@joycehocm, you have gotten some great advice from some wonderful members. We were all new here..."
Did you have open heart surgery?
I was diagnosed with HOCM 8 years ago at Mayo Clinic had a checkup there recently. The exercise test is always fun (ha ha). My BP goes down instead of up in the treadmill.
For treatment, my choice is mavacamten (Camzyos) or surgery for symptom management. Right now, my only limitation is on hills, when my body will just say “Stop” and have to let my heart catch up.
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Thank you! all good to know since I am headed to Hopkins for the first time tomorrow. I have been deep into the HCMA site already - I am a fairly obsessed researcher! Have a great day everyone - this group has been so, so helpful as I start this journey!