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I was not really living, just surviving miserably, and with no hope, until I discovered this group:

http://cardiacathletes.com/

based in Australia, with members all over the world. (There are even two of us in Switzerland.)

They have a private members’ forum too on Facebook. To be accepted, you need to have had some cardiac procedure or surgery or suffer from some congenital or acquired heart condition. Very small numbers of cardiologists with expertise in sports and exercise cardiology are allowed in if they wish to learn from our experiences.

The ethos of this group is that we fit, athletic people who ended up in Cardiology wards refuse point-blank to be treated like mushrooms: kept in the dark and fed shit. Enough! We are working to change that default approach by cardiologists and other medical people, who assume we are too stupid or weak to learn the truth and take better control of our own lives.

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