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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (1049)Comment receiving replies
Hello @valleri , and welcome to Mayo Clinic Connect.
Wow, it sure sounds like this came on rather quickly. I'm glad your doctor thought to do and echo and further confirm with the cardiac MRI.
I'd like to welcome you to the HCM Club...but it's a club none of us wanted to join!
I posted a couple of Camzyos sites online. I confess I am not familiar with how it works, as I had a septal myectomy for my HOCM.
https://www.camzyosrems.com
https://www.camzyos.com/
You mention you have no transportation and would have a hard time getting to the hospital recommended, which is three hours away...do you have a friend or neighbor who would be willing to take you?
Your symptoms sound like they have progressed quite a bit, and I bet that concerns you greatly. I would me for sure!
I am also posting a link to another discussion here on Connect in the Camzyos group. Fellow member @manuelpo has been very helpful with information. Read his post here:
https://connect.mayoclinic.org/comment/1370280/
And if you are not tired of reading yet, if you type in Camzyos in the search area at the very top of the screen, it will take you to the 1000's of discussion regarding Camzyos.
You stated you are 73, which seems young to me! So I am assuming (bad idea) that you are on Medicare? Has anyone tried to check your Part D for you? Or have you tried?
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Thank you for the welcome, Debra. You're right. No one wants to join this club! I live in a rural area, where neighbors don't really get to know each other, other than to say hi when we're picking up our mail. (Our mailboxes are 2 miles from our houses!) Another issue is that the drive is over a mountain pass where there has been a large fire for the past month. And before we know it, we'll have lots of snow to deal with. Our temps are already dropping to 40 at night. (That's good for the firefighters, though!)
My GP told me to call the doctor's office at OHSU and ask if the doctor ever comes over once a month. A lot of doctors at OHSU do that, but not the doctor I need to see. Also, this doctor is the only person in the state that deals with Camzyos.
Aww. I absolutely love the fact that 73 sounds young to you. These days I feel as old as Methuselah! I do have Medicare, as well as a supplemental plan and a prescription plan. I'm so grateful to know that Medicare Part D will cover everything but $2000.00. That's huge! All of the links you posted are very helpful!
Again, thank you for your empathy and your helpfulness, Debra!!