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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (791)Comment receiving replies
Hello there @stillstudying, and a warm welcome to Mayo Connect!
You ask some great questions, which makes me think it is how you picked your online moniker 🙂
Here is a link regarding HCM from Mayo:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
and another from the NIH:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5248664/
Have you had a chance to poke around here in Connect? There is a lot of information to read about so many things, not just HCM.
Member @irishpeaks knows a thing or two or three about ICD's, as he lives with one. And the Camzyos group here in Hypertrophic Cardiomyopathy has been a wonderful place to learn about Camzyos and the ups and downs of being on it.
You are already doing the best thing you can do...learn as much as you can about what you have. That way you can be your own best advocate. Being informed can save your life!
Do you know if the cardiologist you've been referred to is knowledgeable about HOCM and Camzyos?
Replies to "Hello there @stillstudying, and a warm welcome to Mayo Connect! You ask some great questions, which..."
I've always had a sense for correctness which nevertheless can require a lot of digging to verify. Last week I resolved a nagging issue that first triggered in the 70s. Anyway, I have tentatively concluded that at my age, with my other issues, an ICD is not a high priority. Among other things, I found a relevant study that seemed to be based upon appropriate criteria. Being informed can be critical, but few doctors seem to appreciate having their omniscience questioned. In any event, I started Camzyos (5mg) two weeks ago. No noticeable side effects except significant reduction in chest pains and less shortness of breath. I can walk across the room without stopping. New question, however - I'm getting different answers from different sources. Does Medicare cover genetic testing for HOCM, either on its own or as part of the Camzyos protocol?
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Ironically I’ve been home the last few days with some chest pains and was instructed to rest, so I’ve been able to get some responses out in a timely manner.
I’m always glad to share my experiences.
One of the huge benefits of getting an ICD is that a lot of them can come with a monitor that goes in your home and will read/transmit data from your ICD to your electrophysiologist via cell signal (at least in my case that’s what I use). This saves trips to the doctor, can get you high quality readings very quickly, and it can all be stored for an impressive amount of time.
As far as sources for information, I would recommend contacting the device clinic of the hospital doing the implantation. They are usually a wealth of knowledge and resources.
I have been lucky enough to have an older gal that is like my grandmother who is very sharp and experienced help me out.
I have a Boston Scientific ICD and have spoken directly with them on several occasions and they were outstanding as well. They understand the importance and get things resolved quickly. I have had zero issues with the device, as it has worked flawlessly after some setup adjustments.
The designs are far less obtrusive and the battery life on mine was 11.5 years when new, so the maintenance is minimal.
They are literally a lifesaver and I can’t say enough good things about them, but they also pack a tremendous punch when needed. Your lifestyle will change to accommodate this to some extent, but it is worth it. Certainly beats the alternative.
Personally, I’m glad I got mine. It’s literally been a lifesaver.