1. < Hypertrophic Cardiomyopathy (HCM)

New Diagnosis Of HCM

Posted by Rhonda @wifeofhcm13, Nov 15, 2024

Hello everyone,

I’m new to the group. My husband was diagnosed with hypertrophic cardiomyopathy (HCM) after his cardiologist detected a murmur during his routine yearly visit. He has a history of peripheral vascular disease (PVD) in both lower extremities, for which he underwent revascularization with nine stents in 2020. He has been doing surprisingly well since then, with good blood flow and no further blockages.

Following the discovery of the murmur, an ultrasound of his heart was performed, and the cardiologist recommended a follow-up MRI. The MRI revealed some thickening of the ventricular walls, along with near akinesis of the basal inferior wall. However, his ejection fractions were within normal limits. There is some aortic stenosis present, but no left ventricular outflow tract (LVOT) obstruction.

Importantly, he is currently asymptomatic. We received a call from his cardiologist informing us that the MRI results looked good. Our follow-up visit is scheduled for next week.

All in all this information has been very helpful with my anxiety. I am a retired nurse and understand what we may be facing.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

baystater101 | @baystater101 | Dec 16, 2024

Correction of website address for the Hypertrophic Cardiomyopathy Association:
https://4hcm.org
Check it out!

REPLY
joycehocm | @joycehocm | Dec 16, 2024
In reply to @manuelpo "Hi @joycehocm - The first few days very light dizziness mostly when I woke up at..." + (show)
@manuelpo

Hi @joycehocm - The first few days very light dizziness mostly when I woke up at night to go to the bathroom, but that could also be related to a prostate medicine I take that causes some dizziness. I was very careful when I walked. After the very first few days, I put in my mind that I will be ok and not worry about it and all has been great since then. I have been on Camzyos since last end of March 2024 and I have a long way to keep taking it. I have no longer angina or any dizziness anymore. I hope this helps and you get better soon.

Jump to this post

Thank you! Your answer helps a lot - I think I will be on Camzyos within the next 4 or 5 months - they want to try a calcium channel blocker first since my symptoms (breathlessness) is mild. Although, I believe that C2s only treat symptoms and Camzyos treats the condition. Anyhow, I do appreciate knowing what symptoms you have had. If you are willing - could you tell me how on earth you are paying for Camzyos - does your insurance cover all of it? We have medicare (which does not cover it) and a private supplemental plan - and they won't tell us what they will or won't do until we have a script and go through pre-authorization etc. etc. etc.

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1 reply
manuelpo | @manuelpo | Dec 16, 2024
In reply to @joycehocm "Thank you! Your answer helps a lot - I think I will be on Camzyos within..." + (show)
@joycehocm

Thank you! Your answer helps a lot - I think I will be on Camzyos within the next 4 or 5 months - they want to try a calcium channel blocker first since my symptoms (breathlessness) is mild. Although, I believe that C2s only treat symptoms and Camzyos treats the condition. Anyhow, I do appreciate knowing what symptoms you have had. If you are willing - could you tell me how on earth you are paying for Camzyos - does your insurance cover all of it? We have medicare (which does not cover it) and a private supplemental plan - and they won't tell us what they will or won't do until we have a script and go through pre-authorization etc. etc. etc.

Jump to this post

@joycehocm you are welcome. I will have medicare next year. My health insurance is paying for all of that except the $210 monthly copay. My Cardiologist's nurse helped me to apply to assistance with Bristol Myers Squibb (BMS) (Camzyos' manufacturer) so they approved me to pay $200 monthly copay for me and I only pay $10 monthly copay.
Next year, I will purchase medicare part A and its supplemental B. I know they will not cover, people here told me my nurse will help me with the paperwork for BMS who will evaluate my income and an additional option with a 3rd party foundation that provides help for different kind of medicines among them Camzyos. By that time I will be able to find out how much I have to pay since I am aware medicare will not cover. I hope this helps.

REPLY
manuelpo | @manuelpo | Dec 18, 2024
In reply to @walkinggirl "Please double check the link. I get: Sorry! That page doesn't seem to exist." + (show)
@walkinggirl

Please double check the link. I get: Sorry! That page doesn't seem to exist.

Jump to this post

Here is the main link that works:
https://4hcm.org/
Here is the other link where you can chose the group you want to register that you think is closest to what you need:
https://4hcm.org/inspire_events_categories/support-group/
I hope that helps.

REPLY
manuelpo | @manuelpo | Dec 18, 2024

Here is the Mayo Clinic HCOM weblink. The Mayo Clinic is one of the best in the world to treat HCOM.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

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