LVEF 12, many questions

My husband is a 61-year old Hispanic. He has advanced heart failure (dilated cardiomyopathy), LVEF dropped from 18 in October 2010 to 12 a couple of days ago. He is on an intricate mix of ACE inhibitors and beta blockers which made a world of a difference when he finally came to his present dr. in the fall of 2008, after his EF had deteriorated to 9 because of the previous physician's neglect. He had a valve repair operation in February 2002. He also has COPD which seems to have deteriorated lately.

His dr. tells him there are basically three options at this time: heart transplant, VAD or intravenous drug treatment. He will most likely be placed on the active waiting list for a transplant, although I am not hopeful because of the scarcity of available hearts. He says he does not want a VAD (although I suspect he might change his mind if he gets critically ill and no heart has become available). The third alternative is the IV treatment, which I have never heard about before (it was mentioned by a nurse practitioner yesterday, he hasn't met with his dr re. the latest readings yet). I believe the drug is Milrinone? How is it administered, does the patient have to be hospitalized, go into the dr.'s office for IV or can  it be done at home? How often will the IV be administered? I have also read that there are significant risks associated with the Militrone, particularly for patients with refractive congestive heart failure which he seems to have. Is that correct? Do the benefits outweigh the risks? What are the chances for improvement?

He has been told by his physician that he was between category III and IV on the New York Heart Association's scale, however, it seems to me that lately he is in category IV -- he gets fatigued from even the smallest exertion (such as picking up a large pot from an under the counter cabinet). I don't know how far he can walk as he never walks more than very short distances, but last Sunday he had to lean on the pew in church to be able to stand up through a not very long hymn. Very often he is straining to get air and breathes with rounded lips, and sometimes he feels a pressure on the heart and is short of breath even when lying down. Lately his legs have been twitching at night which his neurologist says is a sign of insufficient oxygen in the blood caused by the heart failure.

I would very much appreciate if you could give me some insight into the IV treatment -- can it improve heart function, or only stop the decline, and for how long? What is his life expectance with and without the IV treatments, respectively? Also, regarding a VAD, I understand its purpose is to act as a bridge until heart transplant can take place, but what happens if no heart becomes available? How long can a patient live with a VAD?

[jrbon]

As far as I can see Milrinone is an inotropic drug, but there are others that can be used.

My experience is with Levosimendan, that was administered while I was in the hospital. It helps me although I think I was also lucky.

What surprise me is that you do not mention the possibility of a Biventricular ICD. As far as I understand, this is almost standard in many countries with EF below 30%. Did your husband refused it?

Anyway, before going into more desperation, I would try to look for a second opinion. If possible by an specialist in DCM. In addition to ACEI and BB there are many other meds and complements that might help him.

For an inspiring story, have a look at:
http://www.medhelp.org/posts/Congestive-Heart-Failure/Please-Help/show/1475383

See that one of the participants has only 15% EF and in dialysis and doing FINE.

Jesus