Indicatons for an ICD

[DottyCece]

It is hard to believe because as many on this forum know, I have been through a multitude of problems over the past year.  When I think things couldn't get worse, somehow they do.  Now I do have heart failure secondary to nonischemic dilated cardiomyopathy (EF 30% down from 50%).  I have been maximized on the usual CHF drugs.  I do have a permanent pacemaker (100% VVVI  pacing) as a result of AV nodal ablation.  Now they are planning to change my pacer to biventricular. In preparation for that procedure, I wore a holter.  The holter showed several episodes of nonsustained ventricular tachycardia.  So now, the plan is to do EP studies prior to the procedure to see if VT can be induced.  Is so, I will need an ICD.  I have several questions:

1.  What are the indicators for an ICD in nonischemic cardiomyopathy?
2.  They would like to just detach the current RV wire and drop the ICD/pacer wire in, but that will leave two wires going though the tricuspid which now has a ring on it.  Will there be an increase in tricuspid regurg as a result of the two wires? They are looking at the recent echo and getting an opinion from the surgeon but it is only their best judgement. The ICD wire has a greater diameter than the pacer wire. If in their judgment I would have increased TV regurg, then the RV wire will have to be extracted before proceeding.
3.  Since I am on amiodarone, will that suppress the induction of VT?
4.  If VT is not induced, and only a Bi-V implanted, no ICD, what will happen if by next year my EF is down to 20-25%? I know that 30%EF is borderline but 20-25% is not.

[Marilyn (runner)]

Hi,  I have monomorphic nonsustained VT and monomorphic sustained VT caused from my heart attack scar tissue..  ICD's have shown to save many lives from patients with this history of heart disease.  wmac - You don't have heart disease from what I think I read - yours is an ideopathic vt's and they are not suppose to be dangerous.   I would want a monitor and record them once a year and see if they get any worse and I would want to see an EP doc and get his opinion.  There are drugs I think that can help - but sometimes they can cause more harm than good.  Sometimes getting the right drug with the right doseage can be tricky.  But well worth the effort.  It took me close to a year to find the right combination and in that time - I got shocked 6 times from the ICD but only because I was on no med at the time..  I think they have higher success rates in ablating ideopathic vt's.   I think Dr. Steven Williamson at Brigham & Womens Hospital has a great track record in ablating ideopathic vt's..  You might want to seek his opinion.... I wouldn't be asking people on a web board.  Your case is quite different from mine and mine is from yours.  It needs a good doc to go over your records and start from scratch and a fresh set of eyes..  Write things down..  

I don't want to scare you but to tell you how severe my vt's are is: if I miss my medication just one morning - I can not walk, talk and breath at the same time by noon - I have so many vt's..  That's how bad it is.  No, I cannot go without meds anymore.  I wouldn't want to..  For some reason I'm highly electrical and have been for many years..

I have two devices in me and I'm not eager to get a third.  I'll wait till it breaks and then I'll go get some answers..  I'm not one to jump the gun...  as the doctors are so busy and I figure there are sicker people out there than ME..  so I wait.. It can take mos to get an appt to see my doc..  unless its an emergency.  So, he likes it when I e-mail him and ask those simple ICD programming questions..  Saves him alot of time.. and since I have a manual I can pretty much know what I'm feeling and what features are available to help me.. But I've had the machine for 3 years and we've pretty much set on a certain program (DDD) but if I don't like it - I can go see him anytime and he'll change it..  I don't do it to often as now I have to see him every 3 mos..  Most of my questions can wait that long.... He interrogates my ICD and checks the battery - listens to my new valve and generally asks how things are going? Usually I walk in with a couple running medals and say - its going GREAT..  It takes awhile to get adjusted to being pacer dependent for exercising..  But I'm adjusting..  and I'm better off having it than not having it..  It seems this year My Heart has one 'agenda' and my mind has another 'agenda' - I think we're both going to have to compromise.... and work together..  The days of me telling her what to do - are probably pretty much over..

Good Luck
Marilyn (runner)

[wmac]

HI I JUST READ THAT YOU HAVE NONSUSTAINED VTACH AND SUSTAINED VTACH AND YOU HAVE A ICD FOR THIS, CAN YOU PLEASE TELL MY WHY, I HAVE NONSUSTAINED VTACH  AND POSSIABLY SUSTAINED VTACH AS WELL, CAND YOU ALSO TELL ME HOW MANY BEAT RUNS YOU HAVE HAD? IM JUST REAL CURIOUS AND WONDERING IF IM HEADED DOWN THE SAME ROAD FOR A ICD.
WMAC

[Momto3]

Touche!!  I'm really glad Cindy from MedHelp posted about the number of questions.  Hope you are doing well : )

Connie

[nymomof5]

ok cool ..so med help says 2 questions in 6 months..now we all know, finally  :) Hey have a great day all!

[nymomof5]

i was trying to post a question today about my 11 yr old daughter who also has irregular heartbeats and was told had an episode of atrial flutter but lost the opportunity when my computer got "stuck".  anyway it did indeed say right there when you post your question that since the forum is free and lots of people have questions, that questions should be limited to one question in two months. my last post was 7/27 and that one was about me.  in the time since then my daughter has been rushed to the ER with atrial flutter.  but it kinda stinks that since i used my member name for my question, that i'd have to wait two months to ask a question about my daughter that has since come up.  now i feel bad that i lost my chance to ask my question since i got through to post a question and this dumb computer froze.  peoples health can change fast and new things can pop up that i can certainly understand why some people need to post questions more frequently than the two months. like when my daugther started having chest pain with her irregular heartbeats.  i took her to the cardio and got all the tests done but i had a few questions that i would have liked to bring up to another cardio without having to go to another cardio and getting all the same tests done again while she missed more school. but i was too afraid to post another question so soon after the first one even though the two months were up. i believe the original poster of this thread had a valid reason to ask a question so soon. but yes..it does in plain black and white say at the time you post a question that questions should be limited to once every two months. also i am sorry i lost my chance to post my question and will take my losses and not try to repost and take up another slot when i lost my own chance with this old computer. well, at least i will wait to post another question and just ask her pediatrician the questions i was gonna ask today and see if he can help. have a good day all!

[DottyCece]

Hi

Thank you so much for your kind words.  Yes,Dr. RCJ did help me through email.  That was enormously helpful.  But, he is gone and I have had to deal with many other complications.  Slowly, I am learning and am feeling my way through this maze.  I had a partial echo today and do have to have my pacer wires extracted before they can implant the bi-ventricular/ICD device.  This ventricular tachycardia is very scary.  I have had PVCs and PACs for forever but never this rhythm.

Yes, I agree with you...I have never seen anything of restriction of posting etc. on this site.  I looked again and still haven't found it.  Even when I posted this post, I did not get anything that described these limits.  So, I guess I would appreciate knowing where people are reading this information.  I read the entire Terms and Conditions etc.  I am getting to the point where I probably won't have anymore questions.  I have had everything go wrong that could possibly happen and there isn't much left and I am not excited about thinking in that direction.

Thanks much.  I hope all is well with you.

[green4sam]

I have not found the rules anywhere.  Even when I have posted I have never read anything about the limitations.  So, I wonder if it is just some people making conjectures.  I remember that someone by the name of Hankstar posted all the time and no one seem to comment about it.  I haven't posted for a long time but I have been able to get my questions answered in other ways.  But, I am thinking that maybe other people are not so lucky so if they post more than once, I sure don't care.  Every two months is a long time if there is some urgency.

[nymomof5]

umm...as far as i remember, when i posted my one question...it was suggested in order to be fair and give everyone a shot at posting a question,  it was suggested that one does not post more then once every two months.  Thats why I put the word rules in "  " because it was stated in a way of being considerate to others more then a hard and fast rule. Thats
the only place i have ever seen it written about a limit to the amount of questions one can ask.  Hope that helps..take care.

[nymomof5]

i do believe that the one time i posted a question here, the rules about how often you can post questions were given at that time.  hope that helps.

[Momto3]

I'm wondering if the "rules" about posting were self-imposed by the forum visitors.  Just wondering....Has anyone contacted the board administrator about the "2 month rule?"  I have read the other guidelines, and nada....hmmmm

[nymomof5]

PS...i only posted my question a couple of months ago and you mentioned you posted yours about 2 yrs ago..so maybe since you have posted a question last, they have started to post the "rules" at the time of posting a question? Just a thought.

[Momto3]

Hi Dotty!

I know you have had a rough year, and wish you only the best.  Hope things begin to improve for you very soon.  As I recall, at one point Dr. RCJ stepped in to personally help with your medical concerns.  He did the same for me and I will be eternally grateful for his kind help and assistance. This board has been a wonderful place to gain "extra" information and make friends.  

Just curious...I've been on this board for 2 1/2 years, and I have yet to see the "guidelines" about the number of posts, etc.  In fact, when I asked my question 2 years ago, the doctor TOLD me he would watch for follow up posts. Can someone please let me know where I can find the "rules" for this board. specifically the one about the number of posts? I've read through what I could find and have talked to a number of docs at the CCF, and I'm still looking.  Thanks to anyone who can point me in the right direction.

[pms_barbie]

I think some of us come here to just reinforce what our drs have said.  When I first started having problems my cardio was a real jerk.  He was like this isnt going to kill you.  He put me on sotalol that made me bradycardic.  I went to him crying having a walking around heart rate of 47!!! All he could do was laugh and in my face at that.  Needless to say I dont go to that jerk any more.  I guess no matter what pour drs tell us we would like another perspective on our problems.  Cleveland is noted as being the number 1 clinic.  It just helps to hear from one of their drs.  Its great that the drs take the time to do this message board.  We should all be thankful for that.  Trust me I have been there and that place is busy busy busy.  Doty I wish you well.

[DottyCece]

Marilyn,

Thanks for the encouraging post.  I agree that technology can do wonders for someone like me.  As far as the Bi-V pacers go my electrophysiologist told me that 70% get better, 30% stay the same but they don't get worse.  My own cardiologist told me that he has 10 patients with the device and 6 are doing better, 3 the same and 1 actually got worse.  I do understand that an ICD will give me a better chance of surviving longer but for me it is the fear of sudden cardiac death etc.  Also, I have had everything go wrong that could possibly go wrong in the past year and a half.  It is like a giant snowball.  So, I guess I am very tired but I do try everyday to exercise, eat right, and be very conscientious about taking the huge number of drugs that they are giving me.  Thanks so much for your kind message.

[Marilyn (runner)]

Hi Dotty,  I've read your posts with alot of interest.   I'm not 100% paced but I know how the electrical system can be so frustrating..  and somedays it just never seems to end.   I have an ICD for sustained and non-sustained VT's and I am back on being pacemaker dependent to increase my heart rate for rate response for up to 165 bpm..

But, I wanted to tell you - I've heard wonderful things about biventricular pacing.  Its been very successful in helping people to maintain their quality of life.  From what I've heard you can only 'get' a better quality of life with these devices.  I've also heard that EF rates are not permanent.  You can change that from year to year.  It can actually go UP over time.  I've had mine down to 40% or so and brought it back up to 50% right 'after' surgery - which usually it goes 'down' after surgery.  So I think its possible.

IF you should need an ICD - I wanted to let you know that I don't think my ICD deters my quality of life at all.  It just protects it and I can 'live' and do the things I want to do and feel 'somewhat safe'..  

"If" indeed you need to get one I would suggest you ask your EP doc for a manual and learn about all the different settings.  Which in the beginning can be very overwhelming but it really isn't as bad as it all seems at the beginning..

I think your doing very well.  I'm sure you'll agree its amazing what technology can do today.    

From what I've heard if your taking anti-arrhythmic 'meds' at the time of your ablation -  I heard it can lessen your chance for inducing the vt' for the doctor to be able to ablate it.  But I can understand where they might "not" want you to go off the meds..  

Good Luck and Please keep posting and let us know how you make out..  :-)   I look forward to reading your posts..  Take Care and Best Wishes.  

Marilyn (runner)

[DottyCece]

You are so correct.  I have a wonderful cardiologist who has been enormously supportive...in fact, we have become very good friends.  Having said that, I don't view him to have all the answers.  There are so many varying opinions out there.  Yes, I value Cleveland CLinic and all that it offers.  If my insurance would allow it, I would have been there for treatment, surgery etc.  The answers I received today have been great.  I feel that I have a better handle on all of this.  I do spend much time reading the research etc., but I still want an experts opinion.

[jme]

I am not belittling the severity of your problems and I do have a lot of sympathy for you. However I have been following this forum for a while and while your questions are valid, it seems as if with the severity of your problems and the extent of your medical (cardiology) needs, that your own personal physician should answer your questions. You have too much going on to not ask your own doctor these questions and come to an understanding as why you are receiving such treatment. I wish you well.

[Gaspipe]

Since I mentioned to someone else and since you are a frequent forum visitor you should be aware of the limit on question frquency! Give someone else a chance and I in no way mean to minimize you problems. But...... rules are rules.

[Cleveland Clinic]

dotty,
1. What are the indicators for an ICD in nonischemic cardiomyopathy?

There are several trials looking at implantation of ICDs in patients with nonischemic cardiomyopathy for primary prevention of sudden cardiac death. The DEFINITE trial enrolled patients with nonischemic cardiomyoapthy, an EF of less then 35% and nonsustained VT and found a benefit for the implantation.


2. They would like to just detach the current RV wire and drop the ICD/pacer wire in, but that will leave two wires going though the tricuspid which now has a ring on it. Will there be an increase in tricuspid regurg as a result of the two wires? They are looking at the recent echo and getting an opinion from the surgeon but it is only their best judgement. The ICD wire has a greater diameter than the pacer wire. If in their judgment I would have increased TV regurg, then the RV wire will have to be extracted before proceeding.

There are different pratices. The more wires you have in would increase your risk of complications from the wires.  Some physicians remove wires while others do not.

3. Since I am on amiodarone, will that suppress the induction of VT?

It can.

4. If VT is not induced, and only a Bi-V implanted, no ICD, what will happen if by next year my EF is down to 20-25%? I know that 30%EF is borderline but 20-25% is not.

You should discuss this with your physician. There is also a chance your EF could improve with continued therapy and BiV pacing.  For nonischemic cardiomyopathy, the guidlines and threshold for implantation varies among practitioners.

good luck