Patient w/Dilated Cardiomyopathy/EF stable for over 5 yrs then changes

[palm3]

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.  

[maggiemag]

I am sorry to hear about your husband.  It may be nothing, or it may be a decline.  Sometimes my echo will say enlarged right and left heart and sometimes only left.  I really pay no attention to that kind of stuff anymore.  I also have non-ischemic DCM.  My EF went from 15% gradually to 55% then back to 40 and holding for now.  I have been told that there is no way to predict what will happen in the future.  I was told that I could continue like this for another 10 years or start to go down the tubes in a year.  I just keep on doing what I need to do to keep on.  Maybe he just needs his meds tweaked a bit.  Does he see a heart failure specialist?  It IS good that he feels the same, albeit tired.  Remember that an EF is not static and changes from minute to minute, and that the important thing is how he feels.

[anacyde]

I'm so sorry he is going through this.  Pay no mind to the five year stuff, everyone is so different and advances in treatment mean better outcomes.  As for EF, the decline may not be as drastic as it seems.  There is a +/-5% error margin, and additionally different techs/readers can produce different results from even the same test.

The buggest predictor is how he feels.  Fatigue with children is something I'm quite familiar with.  My husband has nowhere near the energy he once did.  It sounds like your husband is doing wonderfully with the exercise.  Being otherwise asymptomatic is a very very good sign.  An ICD that doesn't have to do anything but be there is also a good sign.  As maggiemag noted, EF does change in all people, so this may not be a true decline.

Sending good thoughts and prayers your way.  I sincerely hope all is well and that you are blessed with many healthy years together.  

[anacyde]

PS: I know it seems like it would require a severe and memorable illness to cause cardiomyopathy, but it doesn't.  It just takes the right virus and the right conditions to create the perfect storm.  Some very common viruses are cardiotropic, meaning they can affect the heart in vulnerable individuals.  Autoimmune factors may also be involved in some people.