HCM-ers: Introduce yourself or just say hi

I was diagnosed with HOCM a little over a year ago when my primary care doctor Dr. Houston (Mayo, Red Wing) felt that I should have an echocardiogram for my shortness of breath symptoms. That test and a stress test showed I had HOCM and a record gradient of pressure on my heart as well as regurgitation of my mitral valve. I tried Metoprolol and Diltiazem but they did nothing for me so Dr. Ommen (Mayo, Rochester) offered me four options and told me to go with my gut. I did. I chose a myectomy through open heart surgery with Dr Rowse (Mayo, Rochester).
I know of no one in my family who had HMC. Many of my relative have had echos now including my grown children and so far no sign of it. I did the DNA test but I was not in the 17% of known genes.
I’m 73, fairly active, and a grandmas of five. I am seven weeks out from surgery, my shortness of breath is gone, my asthma symptoms are gone and though I still continue to build up my strength, I’m excited about my renewed lease on life.

@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)?

@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!

@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!

My name is Barbara - I was diagnosed about 3 years ago - I take Meteprolol 125 mg a day- my main symptom is fatigue and shortness of breathe when going up steps.

@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!

Do you remember what your septum measurements were?
What was your gradient?

@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.