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Why Camzyos instead of surgery?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (44)Comment receiving replies
Hi @joycehocm . I can't speak to why a cardiologist would recommend either medication or surgery - that's way beyond my expertise but your cardiologist and COE specialist can answer that. My own personal view on it is that in one case I take a medication (an expensive one, for the rest of my life, admittedly). In the other case, someone either chemically burns away part of my heart muscle, or they break open my chest and slice out pieces of the heart. (I'm being over dramatic, I admit.) I had abdominal surgery (not heart surgery) and it was into a the second year after that I finally quit experiencing physical pain and emotional distress. I have no desire to repeat that, and the whole idea of someone slicing away pieces of my heart gives me the screaming heebie-jeebies. Yes, I'd do it if there were no other option, but I'd want to try other options first. You might rightly ask why I would chose to toss chemicals into my body that interfere with the way my heart is working. I guess one option just scares me more than the other. As for the expense, I'm in Canada where things maybe work a little differently from the US, and I have an amazing health care plan that covers most of the expense. For all the slagging that goes on about "Big-Pharma", I have to say that Bristol Myers has been very generous about covering what my health care plan doesn't, and I'm grateful. For what it's worth, my experience on Camzyos has been literally life changing and I'm so happy to have had that option. But my advice is worth what you paid for it. Listen instead to to your specialists. Get second opinions if you think you should. Wherever you end up - good luck!
Replies to "Hi @joycehocm . I can't speak to why a cardiologist would recommend either medication or surgery..."
Hi,
I am 8 days postop from having open heart septal myectomy at Mayo Rochester. I am 56, and I didn’t like the thought of having to get echocardiograms all the time with the medication. My cardiologist said that I could try the medicine, or that I could do the surgery, which was more of a “set it and forget it” solution. Due to my age and previous independent and active lifestyle, not to mention the financial angle, I hands-down chose the operation. I almost didn’t have to think about it. I think I took maybe two days to decide? Then I got on the surgery schedule.
I am so glad I did! Yippeeeee!
I, too, had an abdominal surgery go completely rogue 2.5 years ago, so I was deathly afraid of this open heart surgery. I was so terrified that I wasn’t going to live through it that I met up with all of my favorite people the week before my surgery in case I didn’t come through it. I imagined that it was going to be the hellscape that the last “recovery” was, but I couldn’t have been more wrong!
As I write this, 8 days after surgery, I am already feeling and moving better than I was six months after my abdominal surgery. I can’t really believe it, to be quite honest. I mean, I literally just got out of the hospital on Christmas Eve. And I’m only on Tylenol, so it’s not the painkillers talking!
I think lifestyle can be a big factor in choosing whether to take the medicine or consider the surgery. For me, the medicine just came with too many complications and drawbacks that I didn’t want to deal with. Like another person said, I, too, entertain the idea of living in another country, and that wouldn’t be possible on that drug. My age and desired lifestyle made me a good surgery candidate, even considering that I never really recovered from that last surgery that just about ended my life.
I hope this helped a little? Best of luck to you!
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Thank you baystater and boatsforlife! - this is all very helpful. I am 73, mild symptoms started 4 years and didn't get diagnosed until a TEE in June of this year - I only have breathlessness that barely interferes with my daily life but has progressed from earlier. I do know that medicare does not cover Camzyos at all - either in Part B or Part D. Also, I believe that there is no prescription drug cap on a drug that is not being covered by medicare -- maybe Bristol Myers covers more once you are on medicare - I don't know. We have medicare Part D and a good supplemental plan so we will have to see what the supplemental plan will do and what BMS will do. Since it is open season (our supplemental plan is federal), we wanted to research various plans with our supplemental insurance company which is United Healthcare - but they won't tell us anything at this point - until I have a prescription and pre-authorization - so we have no idea which supplemental plan is best - a Catch 22 at this point - oh well - just need to take this a step at a time. Also, boatsforlife - I agree with you about avoiding surgery if at all possible!