My Camzyos Journey: Part 8

[@davidh8279]

My wife (65 years old) had a cardiac arrest on July 19th. She is out of the hospital now but is still in constant pain from the compressions of the automated compression machine that was used. At least she is still alive. She has Obstructive HCM and her cardiologist locally is pushing Camzyos. Our Medicare Part D plan does not cover Camzyos so we have to try to get an exception for it. We will know more when we meet with him in the 3rd week of August. We are also having a Mayo Clinic zoom call next week in regards to possible open heart surgery to scrape away the thickness of the left side of her heart. It will be a major decision on which way to go (surgery or Camzyos). With the high cost of Camzyos, how can one pay for this? What advice can you give us on how to swing the high cost? Also, do you know of any support groups on HCM and Camzyos treatment? Maybe a Facebook group or something similar? Thanks for your help in regards to lowering the cost of this treatment and of the support groups. Great educational videos. Keep up the good work!

[@CamzyosVideoBlog]

Hey Dave! I saw your comment in the Camzyos Facebook group. That's probably the best group out there for support and advice. As far as finances go, I'm not sure how that works with Medicare. I know they are waiving a lot of costs these days to get as many people on as they can. I'm assuming that's for marketing purposes? But it has not performed financially the way it was expected. Therefore, I expect the price to drop because they're looking for that supply-and-demand sweet spot. That's all just amateur business jargon off the cuff. With all that said, I would try to get on Camzyos if she can. Having a cardiologist to advocate on her behalf is a great start. I wouldn't be on this medicine without my cardiology team. I'm glad she made it through cardiac arrest. Sorry about the aftermath, but she's on the road to recovery! Very grateful for a medicine like Camzyos, but septal myectomies have been the gold standard for HOCM for a long time in case it comes to that. Keep me posted! Stories like this inform my video content.

[@muppallpandu3297]

Hey, I am India. Where are these tablets available. How to purchase them.

[@it6642]

Hey, great to hear that 15 mg does its magic. Hopefully, it gets better. Any comments from your Doc regarding the gradient increase (or hydration is the main guess). During the video you mentioned lightweight training, do you have a special exercise routine?

[@CamzyosVideoBlog]

I bought two 15 lb weights that I do light arms and some core with, but I'm extra careful with the core because some of the straining is the type of thing they tell you to avoid. Otherwise, I'll do a half hour on my exercise bike. I could do more but don't want to push too far. My cardiology team doesn't know what to make of the gradient increase. They asked about lifestyle and the only thing I can really improve is hydration. I also don't respond well to beta blockers, so the new calcium channel blockers might help.

[@it6642]

@@CamzyosVideoBlog maybe you have some kind of mitral valve problem that causes increased LVOT gradient.

[@theconventionhunter1324]

Hmmm. Hmmmmmmmm.......