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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (1163)Comment receiving replies
@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!
Replies to "@walkinggirl Thanks for your interest. If I understood correctly we do not need to do the..."
@joeymopete You mentioned that you had been diagnosed with mitral valve regurgitation as well as HOCM. When I had a septal myectomy in July (at age 73, like you), the surgeon also repaired my mitral valve.
I was told Medicare (and my supplemental insurance) did not cover cardiac rehab for the septal myectomy, but they did cover it for the mitral valve repair, so I had 12 weeks of cardiac rehab starting about 8 weeks post-surgery. If you had mitral valve repair and if this quirk in insurance coverage applied to you I assume your providers would have known about it, but it wouldn't hurt to ask.
Either way, good luck with your exercise program. Six months after surgery I am back at the gym 4 or 5 times a week, doing 40 or 50 minutes of cardio (treadmill, rowing machine, and/or elliptical) plus some moderate resistance training.
Each of us is different. Progress at your own pace and listen to your body.
Congrats on the successful surgery.
@joeymopete I am glad that @mbi and @baystater101 had helpful tips related to cardio rehab and exercise. I was fortunate that my former employer's retirement insurance (nonprofit Medicare Advantage Plan) paid 100%, but around here it was a 6+ week wait for an opening. The gym I go to is owned by 2 former employees of one of the cardio rehab places. They were very helpful with starting me off (no heart monitors, though) until I went to cardio rehab for a very short time, it was unnecessary by then. The Y in my small city has all kinds of classes for specific ailments (Parkinsons, breast surgery recovery for example). May I suggest checking to see if there is another way to obtain supervised guidance? By the way, how will the genetic lab people know to retest your DNA? I was told to contact them in 5 years after 2022.
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@joeymopete
After my septal Myectomy, I was told that Medicare wouldn’t pay for rehab. So my Dr told me to walk five minutes, 4 times a day. And gradually increase it each week. My surgery was September 26th and now I walk twice a day and average 3 miles each walk. Sometimes I do more, sometimes I do less. But I’m pretty consistent with 5-6 miles a day. Since I’m retired, I’m thinking of walking as my job. I feel so much stronger and don’t need to nap anymore. I’m expecting to feel 100% by my 6 month post surgery date.