New Diagnosis Of HCM

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

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.

@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.

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.

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

Reading all of the above, I have Peripheral Vascular Disease and the Lipo gene that creates high colestrol.
I have had eight stents inserted in my lower legs this year. Last week after ultra sounds they have discovered that the plaque has returned once again with plans for another operation by end of year.
Are there any suggestions for what to do next. I am on high doses of statins and blood thinners. I weigh 53kg 5'6" height. I have been super fit all my life and at 77 yrs I walk 6000 to 10000 steps a day minimum, play table tennis, lawn bowls and croquet and attend to a busy schedule.
Sharon

@manuelpo
Are you saying you will have private insurance plus medicare? i am curious about what you are describing here because currently I have private insurance which pays for all of my Camzyos, but have been concerned about having Medicare coverage and wondering if my Camzyos will be covered. Thanks for any input you have.

@manuelpo ,
I have to agree, Mayo is the best! I have Apical HCM which is non-obstructive but has its own set of problems. My Mayo cardiologist is wonderful.

Hi @coopstar1949,

On top of your peripheral vascular disease and lipo gene that causes high cholesterol, were you also diagnosed with hypertrophic cardiomyopathy?

@JustinMcClanahan @coopstar1949 Hello, @coopstar1949 I see that moderator Justin asked if you have HCM. There is an additional discussion group for Heart & Blood Health https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/ that you may find beneficial to follow.