Newly diagnosed obstructive HCM: seeking advice and reassurance

Hello everyone,

I was diagnosed with obstructive hypertrophic cardiomyopathy in November 2025, at the age of 51, following a severe pulmonary infection. Before this episode, the condition had been completely silent, and I had lived a normal and active life without knowing that I had it. I have no known family history of HCM or sudden cardiac death.

At the time of diagnosis, I had significant obstruction, with an LVOT gradient of approximately 115 mmHg. I have now been taking mavacamten and verapamil for about six months. My response to treatment has been very encouraging: the obstruction is now almost absent at rest, and my gradient with exercise has fallen below 30 mmHg.

My recent echocardiogram and ECG were very reassuring. My latest 48-hour Holter monitor was also excellent, with no concerning rhythm disturbances. I am able to live normally, exercise, and have very few symptoms, apart from occasional fatigue.

Despite these positive results, I still struggle emotionally with the diagnosis. Because the disease is new to me, I often worry about sudden cardiac death, future complications, whether the obstruction could return, and whether the condition could progress even while I am doing well. I have two children whom I love more than anything, and the fear of leaving them can sometimes become overwhelming.

I would be very grateful to hear from people with a similar experience:

• Has anyone had a very high gradient that became minimal with mavacamten?

• Did your condition remain stable over time with treatment?

• Were you able to return to a normal and active life?

• If medication controlled the obstruction well, did your doctors recommend continuing treatment rather than undergoing a septal myectomy?

• How did you learn to manage the anxiety and fear associated with HCM?

I understand that every case is different and that only my cardiologist can assess my personal risk. I am mainly looking for shared experiences, reassurance, and support from people who understand what it feels like to receive this diagnosis.

Thank you very much for reading and for sharing your experiences.