Connect
← Return to HCM-ers: Introduce yourself or just say hi
Discussion
HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (1163)Comment receiving replies
@joeymopete You had your myectomy in December, seven weeks ago and I am so glad to read that you are doing well and are excited with your renewed lease on life! I, too, am among the people who have not shown a mutated HCM causing gene, perhaps when I get tested again in a couple more years, the naughty one will have been discovered. Your family is wonderfully proactive with echoes, have the doctors of your grandchildren been told of your HCM? My grandson (16) goes to a pediatric cardiologist every 2 years for an echo (unfortunately, his insurance will not pay for it), to be sure he is OK. Has your doctor suggested cardio rehab for his/her "fairly active" patient (you)?
Replies to "@joeymopete You had your myectomy in December, seven weeks ago and I am so glad to..."
Connect
@walkinggirl
Thanks for your interest.
If I understood correctly we do not need to do the dna test again. Researchers will use our sample and, I assume, they will notify us if our gene is identified.
My grandchildren have not had echos. I understand, protocol is that doctors/insurance will only do them if my their parent is diagnosed. It makes no sense to me! I continue to follow up on this! At least…my two kids are in their 40’s and show no signs of HCM.
Mayo doctors told me I would receive cardiac rehab and that I needed it to determine how my heart reacts to exercise. My nurse told me “everyone goes home with a cardiac rehab schedule.” I was then informed by Mayo (when I got home) that Medicare does not pay for it for HCM myectomy surgery. I could pay for it at around $350 a session. Maybe some people’s supplement pays it. I have not gone yet but invested in an Apple Watch and find that my heart rate, at least, is in a good range during exercise. I have a cardiac PA visit coming up and I can discuss some of these things further. It’s all a learning experience!