My husband was diagnosed w/Dilated Cardiomyopathy when he was 27 (2001). We do not know the cause of his illness, except it probably came from a virus. We can not recall a time when he was deathly sick, but we can not think of anything else that would cause his heart to weaken (no drugs, excessive alcohol, familial history, etc).
His starting EF was around 30-33%. He was put on Coreg an ace Inhibitor and had a pacemaker/defib put in within days of diagnosis. One year to the month his ICD went off two times in one week and was put on the nasty ameodorone(bad spelling). He took that for around 5 months, stopped, then continued on his Coreg/Ace. After one year his EF improved to the low 40's and has maintaned in that range for the last 5 years.
It has now been 5 years almost to the day since his ICD fired and he has had no more scary spells. He has never had issues w/edema or feeling light headed (except getting out of bed in the morning). Physicians have been shocked on how well he has done over the years. His blood work is always normal and his stress tests are great (they have to make him get off the machines).
He has received his MBA and had kids over the last six years while working full-time.
I have always questioned how he manages to have so much energy and feel normal while having such a low EF.
He recently went in for a check-up this last week and they said his blood and stress test were great, but that they measured his EF around 30-35%. I have noticed that he has been more tired over the last few months, but we ruled it out to having kids in the house. They also said the right side of his heart was mildly dilated which has never had issues in the past. We are sending his echo for a second opinion and are waiting to hear what he says.
I am concerned that the right side of his heart is now enlarged and shocked to hear his EF has changed. Has anyone out there had similar issues or had an EF be stable for 6 years then drop??? His physician told him it is rare to improve then decline. I am waiting to see what the other cardiologist says, but I am concerned that his numbers are right. For those of you with issues on the right side of the heart, what does it mean now that he is dilated on both sides?
One last thing, he feels the same and says that the only symptom he has is being tired (but he only gets around 6 hrs a night).
I hope he is not starting to decline....we have beat the dreadful 5 year curse you read about and hope to God we have many more years.