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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 22 2:38pm | Replies (736)Comment receiving replies
Hello! Thank you for your response and insight. I have been looking into all options and doing a lot of research, I’m prepared for either option. My cardiologist wants me to try the medicine first, and said if I have bad effects or if I just decide it’s too much of a hassle with my age we can do surgery instead. So I think I’m going to try that route, but I’m still having them get me prepared for surgery as it’ll take around 4 months they said. So I figured in the meantime I could try the medication out at least.
Surgery is terrifying, but I do like the peace of mind of having it done and taken care of and it feeling permanent. So I’m definitely not casting out the option either!
My new cardiologist specializes in HOCM, I am currently being seen at OHSU but my previous didn’t and was local to me and I think that was a big reason I wasn’t getting the care I needed. I do wish I could be seen at the Mayo Clinic but my resources are limited.
I will see my cardiologist in one month for a check up and then 3 months for a full visit again! I do have some questions but always ask people what I should be asking because in the moment I space it all haha,
Right now I try to do “normal” activities with my kids like camping, park, beach etc without overdoing myself and that helps take my stress away, otherwise now joining these forums is a step for me and I may see a psychologist if it gets bad. I hope with treatment it’ll get better.
Thank you for all your guys responses and helpful comments!
I’m glad you got treatment even if it wasn’t the medication, it seems the surgery is very successful and a great option! I hope you are doing well now.
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You have a lot to consider @mckenzie541! Colleen laid out some great questions for you to write down and take with you. I'm happy to hear that your new cardiologist is specialized in HOCM. That is so very important.
If you don't mind, I would add another question to your list, in addition to what Colleen already listed. I would ask if he/she would recommend genetic testing for your kids, siblings and other first degree relatives. From what I have learned, if you have HCM you have a 50/50% chance of passing it down to your children. That also means one of your parents passed it to you and potentially other siblings if you have them. Those are big percentages! The sooner you know, like you at such a young age, the better off you are. This way you will be aware of the big scary stuff, as they say knowledge is power.
Your plan so far sounds very reasonable. It's probably something that can give you time to think about things and decide later if it is something you want to do long term. I see you mentioned that you wish you could visit the Mayo Clinic in Rochester. If the plan you have chosen, Camzyos, doesn't pan out and surgery eventually becomes the option, I would encourage you once again to be sure whomever you are sent to for surgery is from a Center of Excellence (COE). This surgery is so precise, only the best of the best should be performing it. There are a handful of places in the Country that specialize in septal myectomy. You know now that Mayo Clinic is a COE, and they have amazing people working there in the patient service/ business office/insurance that can check to see if your insurance will cover the visit. I was shocked and thrilled at the same time when I found out that because Mayo was a COE, my insurance (BC/BS of Texas) approved me to be seen there. Same thing with Cedars-Saini in Beverly Hills, CA. I went to both places for opinions after being misdiagnosed for several years and once again, my local cardiologist diagnosed me with Sub aortic membrane not HCM. I chose the Mayo, even though it was a bit more difficult to travel to, because when I first met the HCM doctor (Dr. Evans) he did two things not one doctor had ever done. He ordered a chest x-ray and a pro BNP lab. Two simple routine tests that had never been done. The x-ray showed my heart was enlarged and the BNP showed I was developing heart failure. That was the moment I knew I was in the right place. I thanked God for that, even though it meant open heart surgery. Your life is worth a plane ticket to Rochester if it comes down it it!
It sounds like you have some good coping skills, and little ones to distract you from over thinking. Trust me...I know I was a huge over-thinker when I found out. I was afraid I was going to die! I know now I made the right choice once I got the right information. It just took a long time to get that information! Feel free to keep coming back for virtual support, virtual hand-holding, virtual venting! You are in the right place now. I hope you will keep the HCM group posted on your progress.