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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
My apologies for the delayed response.
I do have some uncles with the same diagnosis. But, not everyone of my dad’s siblings have it.
The testing was done by an independent lab that came recommended by Mayo. My brother had his transplant at the Mayo, so his was certainly seen by them, and they asked me to release my test results, so I absolutely agreed if it meant helping others.
I just had an ablation and stopped taking amiodarone. It will be substituted with Sotalol in a couple of weeks. I feel better, and have been working hard enough to sweat most of the day. All signs are pointing towards a successful procedure so far. If it doesn’t work, my ICD will defibrillate me, and there is nothing I hate more in this world than that. I’ve had it happen 5 times early on, and I’d be cool with it never happening again.
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Thank you for sharing that @irishpeaks. I wonder if the odds are similar to HCM, 50/50 that it is passed to another relative.
It sounds like you are doing much better after the ablation. I know that amiodarone has a lot of side effects that are not pleasant. I am not familiar with Sotalol, is it a rhythm regulator?
I cringe for you, knowing you have a defibrillator 😮
I can't imagine how frightening it must be to live with one of those. Like walking on eggshells, never knowing when it may go off. I've heard it described as feeling like a mule kicked you. I've been kicked by horses, maybe mule kicks are stronger. They talked about a defibrillator in my case too, but I dodged that thank goodness. I would not like living in fear of the thing firing off when you least expect it.
How long before you know the ablation/Sotalol worked for you?