Has anyone improved their Cardiomyopathy - low EJF?

[Becca928]

I am 41, diagnosed a few years ago with EJF of 30-35.  My PVC's range from 25,000 to 35,000 per 24/hr period.  I am on lisinopril and carvedilol, but so far no improvement.  Anyone else in the same situation?  Dr feels that cardiomyopathy is from a virus...I am beginning to think it is from the large amounts of PVCs a day.  I will have another echogram in March of this year, if the EJF drops below 30, they want to install a defibulator.  I believe at that point, I might get a second opinion.  The defibulator is not going to correct the problem.   My PVC's is what needs stopped and they won't do anything about them.  

Any advice?

[MichelleP_3811]

Yes, I do believe people who have pvcs have had ablations for them.  The important thing is that they can activate them while you are in the study so they can see where to ablate.  I would think having as many a day as you have they would be going off enough for the doctor to pinpoint where they are coming from.  I am not certain but I think there are a couple of main spots that they very often arise from.  Of course I am not an EP so this is solely based on what I have read.  I would seek out the advice of another EP to see what they have to say about your pvc situation.  

To be honest I am not sure meds would help for pvcs so I agree that arrhythmia meds hold too high a risk for very little effectiveness to be worth in this case.  From what I understand Beta Blockers is the go to med for pvcs and pacs.  If you are having runs of pvcs then that constitutes VT and then the anti arrhythmia meds might work but they do carry a pretty big risk so I can understand your doctor's caution to prescribe but I would definitely seek out a second opinion about a possible ablation.  There may be some reason why you aren't a good candidate but I would still seek out another doctor for advice to be sure you have looked at all possible avenues to help your situation.  Take care.

[Jerry_NJ]

I'm not familiar with EJF.  Is that your Ejection Fraction (J = ?)?  If yes, it would be much better at 50% or better and I don't recall ever reading of a treatment to increase it, but the PVC frequency may be at the root of your problem.

Michelle had personal experience and I am not arguing with any thing she said in her post/reply.

I will add it is also my understanding that and EP sturdy has to show specific electrical nodes (I'll call them) that an ablation of will help reduce unwanted signal to beat, or there is no target to ablate - unlike a mini-maze that makes a pattern of signal blockage, an ablation is target specific, I understand.  I have not read anything I can remember about using a mini-maze to treat PVC, but I believe there are some less invasive ways of doing that than the old fashioned open heart surgery method, a method I underwent when my heart was opened for valve repair - it did not stop my atrial fibrillation, nothing is 100% going in, but many procedures can prodcue results even if just partial.  

[Becca928]

I appreciate the reply.  It is a constant worry on me of what exactly is going on.  I had an EP Study done on my heart too and they could not find any electrical issues.  I mentioned ablation and they said that it was only for people with tachachardia.  The doctors refuse to put me on any medication to stop the pvcs because they state that there is a very high risk of a heart attack on these medicines and without a defibulator they will not do that.  

I may be wrong, but I thought that I had read from other people that had regular pvcs and not tachachardia that they had ablation and they either stopped the pvcs or lessened them quite a bit.  If anyone out there is in this situation, please let me know.

I have cut out all caffeine for the past two years, a cheat only here and there and still the pvcs went from 25,000 one year to 30 some thousand the next.   The odd thing is though I hardly ever feel them.  I feel them when I am stressed, really tired or eat alot of sugar.

Any other information from anyone I would greatly appreciate it.

Thanks!

[MichelleP_3811]

The amount of PVCs you have is very high.  I do believe if there is some sort of underlying cause of the cardiomyopathy that it will improve once the issue is resolved.  I would seriously think about seeking a second opinion.  An ablation for your pvcs may not completely get rid of all of them but lessening them may do you a world of good.  Have you questioned your EP why you are not a good candidate for an ablation considering the health of your heart?  Is there some reason it would not work for you in their opinion?  Well I would personally get a second opinion on an ablation for your pvcs first before I would even consider putting a defibrillator in that needs constant care the rest of your life.  Why not try to fix one issue first before going to that drastic measure is my feeling on it.  Take care and do feel better soon.