From Cardiomyopathy to Heart Failure - and How a CRT-D is a Wonderful Invention

I was diagnosed with hypertrophic cardiomyopathy when I was 38 and have lived with the ups and downs of that for 22 years. I could tell my heart was getting weaker as I stopped cycling with others and avoided steep hills. In the past, I was a competitive cyclist, so this change was hard to take. Blame the ego...

A shocking realization

In September 2021 I blacked out eating dinner and my ICD sent a shock (my fifth in about three years), and I ended up in hospital. I learned about the "death rhythm" when ventricle tachycardia goes into verticle fibrillation and decided I needed to do something rather than ignore the reality.

I retired from work, giving five months' notice. The week I retired I went into heart failure and had a miserable month. I could barely walk 400 yards on flat ground without stopping. I lost weight, had trouble concentrating, had fatigue, etc, and generally felt like hell.

Getting back to normal

My surgery for the CRT-D implant was at the end of February and resulted in benefits almost immediately. Inside a month my ejection fraction moved from 45% to 55% - impressive.

Reading some of these posts on the site, I realize I have it easy compared to many with HF. My cardiology team is excellent. They called my imminent HF in mid-January and recommended a relatively new drug (Entresto) and a CRT-D implant. The CRT now allows me to do almost all activities like doing landscape projects, riding my bike (regular and bike), sailing, etc and generally lead a relatively "normal" life besides high, long-lasting fatigue if I overexert myself.

Community questions

The data around CRT-D longevity is limited and I intend to ask my cardiology team again, although I expect an "it depends" answer to the following questions:
a) What's the expected life expectancy with a CRT-D and HF? Best case, most likely, worst case.
b) What's the next step along this journey into stage D HF and what are the early warning signs?
If there is anyone who has insight, I'd love to hear it.

Hang in there. Stay mentally tough, focused & positive. I know this is hard but we can make it work.