Am so sorry about your loss and your terrible worry. So understandable. In fact, there was a woman here with similar issues.
Right now please try everything you can think of to distract yourself until there are test results. Try yoga, tai chi, meditation, walking, hobbies, cooking, cleaning, etc. Worrying helps nothing, as we know. Maybe there is a website for those with the gene, though at this point you are not there. Wishing you the best, hoping with you, keep us posted.