I was a member of the dilated cardiomyopathy forum at BHF. I signed up there 10 years ago when my mother was diagnosed with dilated cardiomyopathy and left bundle branch block. There used to be a thread called "how long?". I wanted to post this there, but here I am.
So, my 65 year old mother suddenly developed breathlessness one night. ECHO showed an EF of 20%, and heart size twice the normal. After a week in intensive care, she was discharged with EF of 35%, on digoxin, frusemide, spironolactone and losartan. Later, frusemide and digoxin (it was causing arrhythmia) were stopped. And she was put on bisoprolol (slowly built up to 10mg), amlodipine 5mg, losartan 50mg and spironolactone 25 mg.
Something else, I added after advice from the BHF forum was Co-enzyme q10. That really helped stabilise her blood pressure. She still takes it.
ECHO done after a year showed the heart had shrunk to near normal, EF was somewhere in mid-forties.
Her last ECHO was in 2011. EF was 72%!!! The cardiologist said, if he had not known of her dilated cardiomyopathy diagnosis, he would not have guessed. There was still the left bundle branch block, otherwise the heart was perfectly normal (for a healthy 70 year old).
He recommended (slowly) reducing bisoprolol dose to 5mg, but a chest x-ray in 2014 showed mild enlargement of heart shadow, so she went back to 7.5mg bisoprolol.
Currently, DCM is not something we think about at all. She has other age related problems like osteoarthritis and macular degeneration. But her heart is holding steady.
So, here we are. 20 July was the 10th anniversary of her diagnosis. At the time, the doctor had said, two years is the best we can hope for...
I received a lot of advice and reassurance at the BHF forum. I hope this post gives a little of it back.