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defibrillator for cardiomyopathy
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defibrillator for cardiomyopathy

I entered the CCF in 1992 with ideopathic dilated cardiomyopathy.
My EF was 18%. I retired from work and was put on extensive drug therapy. Over the years, my EF went up to 38%, but has dropped down to 30% recently. I am on beta blocker, ACE inhibitor, digoxin, Aldosterone, isosorbide dinitrate. My cardiologist has recommended a defibrillator, but I have reservations. What questions should I be asking? I have read about a biventricular pacemaker/defibrillator. Might this be appropriate? What do I need to know?
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239757_tn?1213813182
dod,

thanks for the post.

Its a confusing situation. Generally, if you have IDCM and a low EF, then population based studies show that people will do better in the long term with an ICD.

The biventricular aspect can be even more confusing as symptoms are important as well as ECG and echo findings to try to predict who will benefit form the device.  The device trys to overcome the inappropriate timing of your cardiac cycle through pacing the ventricles in a more physiologic manner.

CCF has an electrical therapy for hearty failure program that specializes in these questions.  The descision is an important one and should be made after careful evaluation of all of your data.

hope this is a start.
11 Comments
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Avatar_n_tn
Hi,

I had the same problem you have.  Last September, I was in heart failure with a low EF.  I started on all the drugs and read all the research including Madet I and II studies and a couple of current on going ones.  Because I had a nonischemic dilated cardiomyopathy, I was not automatically entitled to an ICD.  I could have a biventricular pacemaker because my EF and symptoms met the Madet II criteria.  (I did have a regular pacemaker.  So, in order to validate my need for an ICD, I wore a Holter monitor which showed nonsustained ventricular tachycardia.  So, my EP physician did an EP study and found that VT and VF was very easily induced so now I was a candidate for the bi-ventricular ICD device.  I had it implanted and will never regret that decision.  My EF increase significantly and my symptoms decreased.  I will never be what I was before I became ill but I am a lot better.  I work full-time and have two additional part-time jobs that are pretty physical...so I am wiped out after eight hours.  Recently, I have been unable to tolerate my regular exercise routine and can't climb stairs very well so I am not sure what is going on.  My cardiologist did tell me that it is hard to predict what will happen in the future.  Some get better and stay better, others get better and then decline and still others may get worse.  I was told 70% get better with a biventricular device.  In fact, there are several cardiologists in my area that are putting these in anyone requiring a pacemaker because a pacemaker creates a bundle branch block which can lead to symptoms of failure.

The actual procedure of implanting the device was no big deal.  I had to have the old wires extracted though because of other issues I have so that required this all to be done in the operating room.  Typically, these are done in an EP lab and takes a couple of hours.  The difficult part is putting the wire into the coronary sinus which can be ticky sometimes.  

I have also found that keeping my weight down and exercising a minimum of 30 minutes a day makes a difference.  I do 15 minutes on an eliptical trainer and 15 on a stationary bike.  Then I do the weight resistance type of exercises too.  I do empathize with you.  I know what this is all about and it can be very frustrating, depressing etc.  I could never imagine myself not working.  My cardiologist thinks I am pretty "tough" but for me this is therapeutic.  I had two open heart surgeries in the past two years and never took off more that three weeks for them.  I have also had numerous cardioversions and other procedures...so it has been a long road.  I view every day as a challenge to be met that day...can't really look to the future but just enjoy what there is...like today the weather is absolutely gorgeous and my children and grandchildren are coming for dinner.  What could be better!!
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Avatar_n_tn
Wow Dotty,  what you do is fabulous...   I have a similar situation and I get so 'wiped' out at times..  I think your doing great.  Full time work and exercising takes alot out of me and generally I find myself only able to work 4 days a week.  But I think your doing FANTASTIC - good for you..  I myself have wondered that when my 'replacement ICD' is done (1 yr.) if my EP should recommend a bi-ventricular device a year from now - if in fact I should accept it.  After hearing about your success - and how good they work - and if indeed it would add a quality of life to my life.  I have had a prior MI, ICD for NSVT and SVT and a mechanical mitral valve inplanted.  I feel I'm 'slowing' down in my stamina - I'm still doing quite well when I work just 4 days a week.  I could quit my exercise and work 5 days - but then I just don't have any stamina when I work 5 days..   My EF is good - but I recently was programmed for 'm 100% pacing in my ventricle and wondering if this is having an ill effect on my stamina.  I also think this coumadin (rat poison) for my mechananical mitral valve - plays havoc on my freqency of headaches.  But I know if I complain - I could end up with more drugs and more side effects - so I'm not eager to say much to my docs.  I'm still (walking/jogging road races and I feel lucky to be able to just 'finish' them.  So, my stamina has dropped - since my OHS - but your doing GREAT..  

Your quote - I will never be what I was before I became ill but I am a lot better. I work full-time and have two additional part-time jobs that are pretty physical...so I am wiped out after eight hours.   End of quote

Dottie - Like I said I work 4 days a week and I go to bed around 8:00 p.m 8:30 p.m.   So I think your doing fabulous..  I wish I had your energy - I have a desk job and somedays I feel like I'm going to fall asleep at my desk - matter of fact some people walk by my desk and ask me if I'm awake !!!  I say:  Hell NO - I'm sleeping don't bother me !!!  hehehe !!  There are many days that I "had" trouble climbing stairs and what worked for me was doing 'spinning' classes or the best medicine was just making sure I swallowd my medication.  I take them one pill at a time now and I make sure I swallow them before I drink my water.  

I was surprised to learn from you message that your cardio said:  "Some get better and stay better, others get better and then decline and still others may get worse. I was told 70% get better with a biventricular device. In fact, there are several cardiologists in my area that are putting these in anyone requiring a pacemaker because a pacemaker creates a bundle branch block which can lead to symptoms of failure."  

I went into Full Heart Block after my mechanical valve surgery and I ended up staying in intermittent full heart block for mos after my surgery - so he programmed my ICD for that.  I find this program on my Pacemaker/Defib is much better than when I was on my own heart beat - but am concerned that depending 100% on a pacemaker - just may make my long term heart condition more severe.  I wish I could let my heart work on its own - but she just doesn't beat well and I get very fatigued and short of breath when I'm not being paced.  

Anyways,  I just wanted to say - I think your doing great. Keep Up the Great Job. Its not easy and knowledge is certainly alot of power and without keeping up on this new technological information - one's chances of survival are decreased...  You've obviously done alot of homework.  Good for you..  

Best Wishes
Marilyn (runner)  

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Avatar_n_tn
Thanks for the kind words.  It is a struggle but one well worth it.  I don't have an ischemia which is a blessing.  Risk factors for CAD is very low for me.  But, I make up for it in many other ways. 100% pacing could  improve your EF and actually cause a decline in EF secondary to the somewhat asynchronous contractions.  With pacing, the right ventricle contracts slightly before the left which decreases the output from the left ventricle and decreases EF which may be what is happening.  That was one of my  causes for heart failure.  I just saw my cardiologist today and he also was telling me that there is increasing evidence that pacing from the right side leads to heart failure in some people and that some cardiologists believe that biveentricular pacing is the way to go from the beginning but insurance companies haven't come to that conclusion yet.  So, like everything, they won't pay for what would be a solution and instead pay for all the complications along the road.  In my case, thousands and thousands of dollars could have been saved had they implanted the Bi-V at the onset but that won't happen in today's world until there is more research etc. etc.
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Avatar_n_tn
Dotti, I am curious as to your ef and chf class when your doctors started talking about the biventricular? I have an ef of 40, chf class 1... which isn't too scary to me at this point, but I'm not too happy about it either. Where did you find Madet 1 and 2? Not sure what that is, but would like to read...

Dotti and dod, is/was your chf arrhythmia driven?

Dotti and Marilyn, I too workout, work fulltime. I don't have a lot left over after work and workouts! I get tired and stay tired. That is, if I have a really busy day, even at my desk job, it sometimes takes me a day or two to get my energy back (even if I've slept well). ((Dotti, do you share your life with somebody made of solid gold who does the laundry, goes grocery shopping, cooks, cleans, goes to the pharmacy (!), pays the bills?? Whew!!) You both have wonderful attitudes! It is sometimes tricky to keep the positive at the forefront! Thanks for the inspiration!

Marilyn, thanks for your post way below! :) I was waiting for the chance to respond again. I'll keep my eye out for research on that med. Really sorry coumadin may be responsible for your headaches! Sorry we hafta take it...

Take good care all and best of luck - dod, with your decision and the outcome!
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Avatar_n_tn
Hi,  I just read your post and I did a search on the American Heart Association web site and I came up with numerous articles - but enclosed this particular one.  




MADIT II Trial -- Prophylactic Implantation of a Defibrillator in Patients with Myocardial Infarction and Reduced Ejection Fraction

Brian McGovern, M.D.
Massachusetts General Hospital; Chairman, Atrial Fibrillation Foundation

Over the last decades, there has been great progress in reducing death from cardiovascular causes, but there is much to be done. Cardiovascular disease is still the single most common cause of death in the United States. Patients with myocardial infarction (MI) and reduced left ventricular function are at the highest risk for congestive heart failure (CHF) and arrhythmia-related sudden cardiac death (SCD). Statistics show that there are 340,000 out-of-hospital or emergency room cardiac arrests per year in the United States
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Avatar_n_tn
Hi,

I was in Class III of the New York CHF classification with an EF under 30%.  The Madet trials research can be found on the Medtronic site.  Also you can do a search on Medscape (signing up is free) and put in Madet I and Madet II trials. There are other ongoing trials but the names of them excape me right now.  There is a very interesting article at http://www.medscape.com/viewprogram/3566 that details information about CHF and biventricular pacing.  I found it very helpful.  It did go through a lot of the research that has been done and talks about ongoing research.  I read those and then ask my cardiologist about things I don't understand well.  He is very patient with my many questions but actually I think he likes to be challenged!!!

Regarding ICDs and nonischemic cardiomyopathy, I did a search on this topic on Medscape and got some good sources that discussed this.  The current research shows that there is an equal benefit in the nonischemic population as in the ischemic population.  Last I heard was that Medicare was going to approve ICDs fro nonischemic patients but hasn't done so yet.  They were to do in in January but I am not sure what the hold up is related to.

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Avatar_n_tn
Oh I forgot....regarding the household duties etc.  I do have a husband and he is learning to do more things.  It's never how I would do it but I just let it go if I can't do it myself.  I have learned to accept less than what I would desire and it is still okay.  We eat out a lot which is good to do.  I just have to  watch my diet though and that is sometimes hard to do.
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Avatar_n_tn
Hi Marilyn,

It was with a slight shock that I read your post, as Brian McGovern had been my doctor at MGH at one point. He died very tragically, which does not bear going into here. I am very glad now to read what he wrote! Thanks for investigating this! I copied to a file that I saved and can now read and doubtless re-read. Thank you again - as ever, wanting to learn more. E.
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Avatar_n_tn
Hi Dottycece,

Thanks very much for your response! I learned from it and now have a lot of reading ahead too... look forward to finding more answers to the unending questions! You and Marilyn have given me a lot of homework. I'll read it on the treadmill... or maybe outside in the beautiful sunshine! Hope things go very well for you! E.
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88793_tn?1290230777
Hi Dottycece,
You mean Medicare is that the Australian version?  What to do if Government not provided fund for the patient?  Is that mean patient his or herself has to insure a private health insurance in order to get an ICD?  I wish to know more about this side.
Thanks
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