I'm 55 years of with familial HCM - MYH7 V606M; VAL606MET. Just curious about other's post septal myectomy experience has been and what the course of your disease has been over time. Have you needed additional treatment? When did you feel back to a normal life? If you continued to be symptomatic what has your journey been like? What has helped you cope and make sense of things?
I am 2 years out from septal myectomy, mitral valve replacement, MAZE, and left atrial clip. Surgery at Duke January of 2022. I was in hospital 14 days. I think because of the various arrhythmias post surgery and the concern that I may need pacing. Also, during surgery I had a "severe coagulation event" and was low on iron. I understand the surgery was complicated and that my surgeon tried to repair my mitral valve. Unfortunately, my LVOT gradient was 30 at rest and 50 with dubutomine (sp?). He felt this was unacceptable and understanding I did not wish to have future surgeries if not absolutely necessary replaced the valve with a mechanical valve.
It took the better part of 18 months to begin to feel better and some level of recovery. Until 5 months ago I was only able to work part-time and often that felt like too much. A full schedule is too much I'm finding. My level of energy is unpredictable and less than what I had hoped it would be at this point. I have struggled to maintain 150 minutes of moderate exercise and lifting weights 2 x a week. I find that working and hitting those exercise targets leaves me with exacerbated heart failure symptoms and little energy to do the basics: grocery shopping, house keeping, engaging in social activities, etc. This has not been my life until about 4-5 years ago. Yes, I had periods of feeling better and worse but I was able to work a 60 hour week, socialize, care for my home, workout regularly, and go and do and feel normal. I have run organizations, gone to graduate school, and raised a child as a single mom....just been able to do and achieve and be very productive. All with more energy than most people.
Post surgery and over the last few years, I don't recognize the person that I am. It is hard to adjust and know if this is what to expect as my new normal. I understand that having a mechanical valve means that it is harder for mean to do cardio - the circumference of the valve is smaller than the native. I wish I'd been told this prior to surgery - I may have made different choices. Probably not. But so many doctors have no idea of what quality of life is like post treatment and surgery. I get it. They are really fixing the most immediate issue.
I struggle to differentiate between what is driving my continued fatigue and heart failure symptoms: normal post surgery/mitral valve stuff, my HCM stiff heart, my metoprolol, etc. I always put it on my lack of discipline or will or whatever. I make it a personal issue. I know that is a defense strategy - thank you therapy for that insight- what gives me a sense of control. I'm in the Odyssey trial for non-obstructive HCM - after myectomy I'm considered non-obstructed.
Thanks for letting me share and process. I look forward to learning from your experiences.
------------------------------
Ann Church
Counselor
Kingsley Road Counseling and Consulting Group, PLL
Charlotte NC
------------------------------