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

Last updated: June 2022

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.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Heart-Failure.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Do you have an implanted/monitoring device?