@lucy4 Hello, Lisa.
Hilde here, also from Ontario, 73. I am sorry to hear you are having such a hard time getting a diagnosis. It is hard sometimes to get the doctors to refer you to the right place.
In my case the diagnosis came so fast that I was not ready for it. I had a fainting episode when I was 66 and my nurse practitioner sent me to a number of doctors to find out the cause, among them London Health Sciences Cardiac Care Services at University Hospital in London, Ontario. They diagnosed HCM right away and wanted me to go on a beta blocker and have follow up every 6 months. Since I didn’t have any symptoms at the time I refused medication and care, having other things to do in life at the time. Over time, about 3 years later, my energy level was going down and I started to have swelling in legs and feet. Back to the n.p. who sent me to a local cardiologist with my old report. This doctor was very angry with me but sent me to the Peter Munk Cardiac Centre at University Health Network, Toronto General Hospital. I have been going there for about 3 years for detailed echocardiograms and have been on Bisoprolol since then which took care of the swelling just fine. Since February this year I have been on Camzyos and it seems to work as far as reducing the shortness of breath and a slight increase in energy.
They are the foremost centre for HCM in Canada and with your family history try to convince your doctor to refer you there. They also do genetic testing on you and your family members if they want to know if they have the condition. The doctors there are very informative and you can see all your test results by accessing the portal. You can also communicate with the doctors over the portal.
I was wondering how your father and grandfather were diagnosed or if they ever definitely were. I don’t know how long clinics have been able to diagnoseHCM or HOCM, but i think it is not all that long. I am quite sure my father had it, undiagnosed. He died in 1980.
Wishing you all the best in pursuing this. Let us know your next steps. And do try to continue doing things that are meaningful for you in life as much as possible. Having a chronic illness can eat you up and we are so much more than our condition. Much love ❤️.