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Avatar universal

Cardiomyopathy / ICD

I am 50 yr. old female dx. 5/04, CHF and dilated cardiomyopathy.
My EF at time was 10%. As of 4/05, EF is between 25/30%.
My cardiologist is suggesting I have 2 lead ICD to prevent SCD. I had Cardiac MRI April 05, cardiac cath May04 several EKG's and Echos showing no blockages, worn holter monitor for 24 hrs. and have shown no signs of electrical problems.I did have one episode of VT during initial hospital stay. I have not had any stress tests on treadmill and have been told not to exercise, with the exception of moderate walking. My question is if I have improved and continue on present meds, Coreg 12.5 2x daily, digoxin, aldactone, altace is there possibility of improving EF and not requiring ICD? I'm aware the guidelines of qualifing for ICD is EF < 35%. Read stories of being shocked by ICD when unnecessarty and it's making me anxious about this procedure. Thank you in advance for your answer.
10 Responses
239757 tn?1213813182
MEDICAL PROFESSIONAL
oneheart,

Its a difficult question. We treat patients with ICDs based mostly on population studies and not individual criteria.  One day, we probably will have a better way to identify those that will specifically be at risk of sudden cardiac death, but we are not quite there yet.

There are drawbacks to an ICD such as uneccessary discharge and infection risk. These are often not commented on compared with the survival benefit seen in studies.

The improvement of EF is also not predictable. With a low EF and a history of VT, I would be concerned so its probably worthwhile sitting and talking to your physician about the risk and benefits here. I find some patients also have some of their concerns alleviated by seeking a second opinion.

good luck
Avatar universal
Hi,

I am relatively young and employed full-time plus...I have a dilated cardiomyopathy and do have a biventricular pacemaker and a ICD.  My EF was at 30% but with the bi-v pacer and the drug therapy it is now at 40%. I agree with the MD...get another opinion because you really have maximized your drugs yet either.  I take 25 mg coreg twice a day.  Maybe you'd be a candidate for a bi-v pacemaker.  They have had a lot of success with those in people with low EF.
Avatar universal
Hi, Im a 43yr old female.  My heart beats in bigeminy constantly, its my normal rhythm. I also have many runs of Vtach daily.  I've had sustained Vtach also.  Almost 3yrs ago I was diagnosed with dialated cardiomyopathy, heart failure, my EF was at 30% (had heart cath)  I was put on Monopril (ace inhibitor)  I have also had 2 failed ablations, because my arrythmia is coming from the outside of my heart.  I am also on an antiarythmia, which was just switched 2 weeks ago from Sotolol to Flecainide.  When I was on the Monopril my EF went from 30% to 50% (I had also lost 155 pounds, which I know helps) my doc took me off the Monopril, 6 months later my EF is still in the good range, it hasnt gone back down,,, Oh I almost forgot, "I do not have an ICD",, I have been managing all these years without one,,, I also do cardio for an hour 5 days a week, ( and I really push myself) and weight machines 3 times a week... Good luck to you,,, Amy,, if you want to chat, feel free to email me,, ***@****
Avatar universal
Thanks you all for your comments. I have taken your advice and will be in Atlanta next week to seek second opinion from cardiologist at Emory University. Your positive comments on this disease has left me feeling better. I live in Florida and have had a negative outlook from my cardiologist here. I'm sure he is only concerned with my well being and wants me to acknowledge the fact that cardiomyopathy is something that can be fatal if appropriate actions are not taken. He has wanted me to have the ICD since last December. However, I have been extremely stubborn about it due to my own anxiety over the procedure. I have discovered in the meantime a wearable defibrillator and intend to discuss this extensively with the Emory cardiologist. Has anyone here heard of this alternative to implantable defrib. ?
I will post again on my return from Atlanta to let you know the suggestions of the cardiologist there. Thanks again for your response!
Avatar universal
Hello smeltzy, just read your post and I'm very curious and excited. I'm 41 female and I've had PVCs since age 18 maybe longer. At age 30 I had a 24hr holter and it recorded 450 PVCs per hour every hour. Mostly singles, some runs of bigemny. No VT. Cardio said benign, no meds were necessary, said meds probably wouldn't help, and to foget them. So I did, except I took xanax occassionally to help with the anxiety.

Now, at age 41 I felt them coming on strong again, so I did another holter, this time 48 hr. PVC are now 1220 per hour--every hour, and I think are still increasing to regular bigemny.

You are the first person I've come across who has them at this high a frequency, as "normal". I'm not excited by that, in fact sorry that you have them. But I'm hoping you might be able to share some more of your story. I've always been told these are benign. But why are they increasing. I've read they may decrease too. I think stress is a big part. I do feel so much better when I exercise heavily, but it doesn't seem to decrease the PVCs.

How long have you had such a high rate. Do you know, or did your doctor tell you if you developed the cardiomyopathy from the PVCs frequency??
Avatar universal
I am a 36 yr old female, diagnosed with CHF and cardiomyopathy at 31. Ejection fraction was around 35%. 2002, had a biventricular pacemaker implanted. Last week an echocardiogram indicates ejction fraction around 50-55%. I currently take Coreg 25 mg 2x/day, Lasix, have discontinued Aldactone and Digoxin recently.
I mention all this to say, the combination of pacemaker and medications have made a difference in the findings of an echocardiogram! Think positive and good luck!
Avatar universal
Hello, thanks for sharing. I've requested an echocardiogram from my MD but haven't heard back yet. If I don't hear soon, I'll make an appointment with a cardiologist directly, since my MD doesn't seem too interested in following up.

I know the standard line has been "PVCs=benign", but I don't think they know all they can. If they are honest, they will admit that.

I've met a couple of people on this forum (so I know there has to be more in the world), who have developed CM after having high frequency PVCs for years. Coincidence? Maybe. Their doctors are starting to think otherwise, so maybe it's just a matter of time before they change their thought process on PVCs.

Again, thanks for sharing and I hope you continue to do well.
Avatar universal
I have recently been told that i am a good candidate for an ICD.
I would appreciate any information that anyone who has one would share, but my question is the implant procedure open heart of laproscopic? I was so overwhelmed at the office yesterday that i forgot to ask. Thank you
Angela
Avatar universal
I am age 60 and found out about 6 weeks ago that I have a low EF.  After a cath., they said it was 10.  The arteries are good, but I have some significant left ventricular dilation at about 7 cm. and evidence of muscle damage from unknown causes. My right ventrical is normal and valves ok. I have had a left bundle branch block first discovered at age 20, but it is asymptomatic.  I can exercise without symptoms except that one knee is starting to twinge.  I can walk steadily at 3 mph for at least an hour and that is in Dallas area at 9 to 10 p.m. when it is still quite warm.  I also sometimes jog in a local swimming pool for 35 to 40 minutes while continously moving my arms.  I go 50 ft. for each lap.  I go forward for a lap and then go backwards.   2 Cardio docs have mentioned the defib unit. and recommended it.  I am not going to do that and am not afraid to die as long as it doesn't hurt much.  It sounds like a VF would be painless enough.  I plan to keep working and exercising.  I may slack off some on the exercise due to the knee flareup.  My pulse rate is back to under 90 quite soon.  I am trying Coreg at 3.?? mg.  I have fewer PVC's with it and seem to feel better somehow.  I always feel good when exercising except I wish we would get a cool front.  Pulse rate is down since I picked up my exercise program about 6 weeks ago after they said my heart was weak.  I don't feel like it is weak due to the amount of exercise that I can complete.  

Perhaps doctors are getting too locked into this EF thing.  I also heard of someone who runs marathons and has a low EF.  I didn't get a number from this cardio tech, however.

My question is "Would any of you worry about a low EF, if you had my set of circumstances?"  Thanks.

Avatar universal
I can't relate, I had a stress echo with dopler done but they wouldn't give me any results except that everything was "normal". I've heard the EF can be plus/minus up to 10%. But yours does sound low.

I hope that you keep asking the question, there's lots of people on this board but it's hard to read through all the threads if they are a little older as this one is. You definetly do far more physical activity than I do, keep it up, sounds like it's brought you this far.

Have you tried posting the questions to the Drs. here to get their opinion?
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