23M FTM - Just survived a cardiac arrest, diagnosed with severe obstructive HOCM, and had to stop Testosterone. Need advice and support.
Hi everyone,
Im 23 years old FTM and recently my world was turned completely upside down. In July, I survived a sudden cardiac arrest caused by ventricular fibrillation. I was rushed to the ICU and just had an ICD implanted.
After all the testing, the doctors diagnosed me with severe Hypertrophic Obstructive Cardiomyopathy (HOCM). My wall thickness is 26-27 mm, and my resting tract gradients are very high at 52-53 mmHg. I am currently on 5mg of Bisoprolol daily to manage the pressure gradients.
Being trans makes this twice as hard to cope with. Because of the high gradients and cardiac strain, my cardiologists forced me to completely stop my Testosterone treatment for a while until my heart stabilizes. Because of this, my period just came back, and the dysphoria is hitting me incredibly hard right now. I feel trapped between trying to save my life and losing the progress I fought for over the last 3 years.
I am currently off work, recovering at home, and waiting for a major cardiology re-evaluation in February to see if my heart has improved or if I can start new medications.
I am reaching out to this community to ask a few things:
Has anyone here especially younger people or anyone on HRT navigated severe obstructive HOCM and beta-blockers?
How do you deal with the extreme fatigue and mental toll of this diagnosis?
For anyone who had to stop T or HRT temporarily for heart issues, how did you cope, and were you able to safely restart it later?
Any advice, words of support, or shared experiences would mean the world to me right now. Thank you.