Hi Jason,
I am an 81f with ApHcm. I was not diagnosed until I was 78 at which time I was not taking any meds except levothyroxine for hypothyroidism. Was quite a shock for me so I understand how you were feeling. I was able to get an appointment at the HCM clinic at Mayo, Rochester. Have a wonderful cardiologist there. I also have a small aneurysm on the apex of left ventricle. My genetic test also showed a variant of unknown concern. You asked about aneurysm risk. That is why you have an ICD. My cardiologist says I am entitled to one but at Mayo they have found the risk of inserting one outweighs the benefit for those in their 70s and 80s. So, I opted to go with his advise and not receive one. I have 4 daughters. Three have been screened and my oldest daughter also has ApHcm. She was quickly given an ICD and currently is not on any meds. I was not put on any meds immediately because I had no symptoms except occasional palpatations. Then six months after diagnosis, Afib presented its ugly face. I was in persistent AF for six months before it was controlled. Long story, but several rate meds were tried to no avail. Lowered my BP quite low but didn't control rate or rhythm. Was referred to Mayo heart rhythm clinic (which took 3 months for appt.) and EP gave me options of rhythm meds or ablation. I asked his recommendation and he said he would start with meds so am now taking Dofetilde (Tikosyn) and it has done a good job. However I started having breakthrough episodes which converted on their own after about 36 hours and I am now taking Jardiance in an attempt to lower my filling pressures and potentially help with the breakthrough episodes. The only other symptoms I have had are moderate lightheadedness and occasional fatigue. Of course, the fatigue could be due to age. As I said, I am 81. I am active and walk 2 to 3 miles every morning. I also do exercises about 3 days a week. My daughter who has ApHcm works full time, excercises and lives a normal life. Live your life and be thankful you have good health care. Do get your kids screened with an ECG and an Echo. That is very important. My cardiologist said my kids should be screened every 3 to 5 years. Wishing you the best in this journey.