ICD

[jvalone122554]

I have a question and in need of a quick respose...PLEASE.  I will soon undergo surgery for a ICD, however I'm NOT sure if I'm making the right choice.  5 years ago I had 3 stents implanted and at the same time my was diagnosed withCardiomyopathy.  My EF at the time was 18%.  3 months latter went back to the hospital for Breaky Therapy and another stent.  I now have 4 stents in my heart.  
NOW.....Oct 2007 I want to have some elective surgery and went to my Cardiologist to get clearence.  He wanted me to have a Stress test to see how I'm doing.  WELL......2 of the stents have scared over causing blockages and my EF is down to 28%.  Nothning was done at the time of the angogram.  My Cardiologist recomends that I have a ICD vbecause my EF is below 35%.  MY question is HELP!!!!!!  Google is a wounderful thing however, I have done extensve reading regarding ICD's and not sure if this is what I want .  Will the leads malfunctions?  Will they scare over with scare tissues?  What will happen if these leads needs to be replaced?  I feel as tho this might kill me not save my life.  All the side affects of maintaing this.  My body has shown that it will scare over the stents so why not the Leads?  Can I make my heart stronger and get out of the danger zone with medications?  Help me please.  I am schedule to have this done the 26th of October, and I'm not sure.  

[pusher]

You didn't say if you had an electrophysiology study done.  That is where they insert a catheter in the right side of your heart and attempt to induce a fatal arrythmia.  If they can they will put in an ICD.  If they can't induce a fatal arrythmia they won't implant an ICD.

There was a study done several years ago call the MADIT trials that proved that people with bad arrythmias (VT and VF) or were suseptible to them greatly increased their chances of survival with the use of an ICD.  People with EF's at 35 or lower were determined to receive the most benefit.

I have an ICD and it has saved my life on several occasions and I am thankful I have it.

As far as the leads scarring over that won't happen.  They are not like stents.  A lead is imbedded in the inner wall from the right side of your heart and the ICD is generally placed in your upper left chest area below your collar bone.  A single or multiple leads are inserted in a vein.

Stents can plug up for many reasons because they are hollow with blood flowing through them.  ICD leads are not hollow, don't have blood flowing through them and don't occlude (scar).

Sure, there have been instances where ICD companies have had recalls for faulty leads or ICD's but the instance of problems have been awful small considering the numbers of total ICD's currently in use.

An ICD will only help you in the long run.  I would be more concerned about getting the stent closure issue taken care of.

Good luck to you,

Pusher

[ajrenalli]

studies have shown an ICD can reduce mortality.  It is really simple and could save your life.  Good luck.

[FLBrat]

A bit over two years ago I wondered the same things.  Last week I found that one of my leads is the lead being recalled by Medtronic.  I actually just shook my head and thought, gee, I can't be the one in thousands to win the lottery...but I won this one!  My husband has worried about this issue much more than I have.  I have elected to have them readjust the setting so that it alarms if a problem arises.  In all his worry he asked if maybe I should not have had the ICD put in to start with.  My response...well, then I wouldn't be here today making this decision because I am sure I would have passed without this device even with a screwy lead.

It is your choice to decide how to proceed.  Decide if what you can gain against what you stand to lose.  For me it was quality of life vs just not being here.  Good luck in whatever you decide.  I know there are some who opted not to have an ICD and they have done well.

[ajrenalli]

Fellow bionic woman, I just got the scoop on the faulty lead..........they say to watch for a marked increase in OHMs or decrese in impedence during the interrogations.  I read somewhere that the lead could simply be replaced, and the old lead disconnected and buried in the heart, to avoid the trauma of explanting.  :)

[Silentchazz]

I'm due for possible ablation
Had icd for 4 years Got recently 5 heavy shockd

[often]

I fought against having the ICD implanted, but finally realized that it could save my life one day, as my cardiomyopathy/chf increases the chance of sudden cardiac death.  I have had no problems with the ICD portion of my devise...the bi-v pacemaker portion improved my quality of life immensely.

It is your choice, of course, but I have not had any problems with mine....well....mine does have one of the dicey leads, but I trust my docs to decide what is best in my particular case as far as dealing with it.  

[jvalone122554]

Thank you for your comments.  As the 26th gets closer I still wounder if I'm going through with this.  I spent the weekend in VA moving my daugher back to NY, as I left her I woundered if I would see her again.  My desion is a hard one to make. I fall into that below 35% EF and should just go ahead and do it, then cope with it all.

Logicaly, I would tell my friends or family members to have an ICD if it would save their life......However I'm dealing with the emotional side of this.  As I told my wife today it feels like jumping off a boat with a life jack on.  The life jacket will save your life......but the sharks will kill you!  I feel some what the same way.....the ICD will save my life.....However will the leads will KILL ME?   What you said regarding the leads make sense.  I just need to trust.  

[jvalone122554]

Thank you all for your comments.  I hope I will be as strong as you have been.  I don't want to be stupid and NOT do this, BUT will I be able to live with this.  Read my comments to pusher and please respond.

[FLBrat]

fellow bionic woman...lol.

thanks for the info.  I think I will have them adjust the settings to the lead and take the chance that no fracture will occur.  If there is danger the setting will alert me in time to seek help.  If that occurs, then we can go the route you mention.

Thanks again.

[FLBrat]

Ever heard the old saying:

Fish or cut bait?

Dont let yourself shilly shally any longer.  Do your wife and yourself a favor, commit to a decision and go forward.  

It is not fun to have any surgery, but if you would logically advise your closest loved ones (family) to do it, you know you are already telling yourself to get it done.  If you decide to make a solid decision a lot of the stress will fall off of your back. This way you can plan for future visits with your daughter..

If you decide to buck your own logic because of a gut feeling, still make plans to visit your daughter.  Never limit yourself.  There are some people who made that same decision and are doing well.

Hey, I am a big believer in prayer.  I am going to include you in my prayers tonight and ask that you are able to clear your mind enough to do whatever is the right choice for you and your life.  That is actually the most help I can give you.

[ajrenalli]

I wise man once told me that security is like cutting off your right arm so you don't lose it.

[often]

So far, the risk for death from the Sprint Fidelis leads is .0018%.   I suppose that can change over time....there are over 200,000 devices out there with the suspect leads.  

Now then..the ICD can help save your life.  You have a far better chance of dying doing any number of things than you do by faulty leads in an ICD...and any ICD you get won't have the suspect leads.  

To be honest...I worry far more about the food I buy killing me than I do the ICD malfunctioning...

[vienna13]

Sorry to say, but you are NOT ready for that!!!! You shouldn’t do it!! At least not just yet! You are NOT ready .You are talking to my friends here and they are wonderful, but non of them can be sure if they are feeling better because of the ICD. We had an  other dear friend on line friend Julie on an other board. She said ICD NEVER for her, after all she got it, did it save her life? No. She died about a year later.
Or do you remember 'Maharet' the women who had nothing but a pain after she got an other then an other ,and an other... it was a horror story. I prefer to die then have one.
  You must be sure YOU want it!! And if you get it , you must love it, but now when you still don’t have it …just close your eyes….do you want it?. do you love it?.....now what you feel that is  the answer for you…not what my friends are  or I am telling you !!!

[FLBrat]

see, I told you some have done well without the ICD.  Vienna is a spunky one for not being battery operated!  (I think she runs on solar power....)

[vienna13]

Brat You got it!;) My secret is out......... :)

[pusher]

Do I feel better?  Yes I do.  Did an ICD make me feel better?  Yes it did.  Do I feel better physically?
I can't say that I do because I still have arrythmias.  Do I feel better mentally and emotionally?  I certainly do.  I know that if I  have a bad arrythmia my ICD will shock me out of it.  That is a huge feeling of relief and certainly has a calming effect on how I feel in general.  

I am not going to tell you that you really need to have one implanted.  That is for you to decide.  All I know is that by my having one gave me and my family peace of mind that another treatment base had been covered.  That the next time I had a fatal arrythmia I wasn't going to die or hurt someone else if I was driving or riding my motorcycle or mowing the lawn or anything like that.

So you decide.  Is it worth all the worry about a faulty lead or the discomfort you will have for a few days after it is implanted, or is it worth giving you and your family the peace of mind that if you do have a bad arrythmia the device will probably save your life.

None of us really understand the situation you find yourself in, your health history, your stress level, any of that just like you don't really know ours.  None of us are doctors and at some point we all find that we have to trust them.  I think you are at that point now and really need to trust what is being told to you is accurate, honest and in your best interests.

Vienna made a comment in her post about a friend dying.  People die from heart disease everyday.  Some have had ICDs, some have had LVADs, some have had stents and some have even had Transplants.  Having any of those devices is never a guarantee, but they sure are good INSURANCE.

I know it isn't an easy decision.  Maybe this is a time when you can't make a "gut" decision.  What does your arrythmic heart tell you do to.

Good Luck,

Pusher

[ajrenalli]

vienna also will not get a mammogram or a pap smear, even though she is, umm, of the appropriate age for one.

[vienna13]

right ajneralli . :) I also keep my diet 100 chemical free, (cant help if hiding chemical,)  take my medications as prescribed,  exercise 2 hours a day.....SO I do my best to stay long in this Earth.
My staying will be exactly dictated and depends on the rights and wrongs of  MY OWN believes and decisions  never what others are suggested, recommended ...............Period.
(We all die, so I mean added to that fact.)
  
The thing is that we all must do what we believe in!!!!!!!!!

I don’t go to church, only as a tourist to  pay my  admiration for the artists for creating it.

No Mammograms. I chose to believe that:

Mammograms Cause
Breast Cancer, uncomfortable, I hate the idea to let my breast to push by that mashie.  

http://www.rense.com/general76/amam.htm

http://www.rense.com/general48/mam.htm

I don't take flu shots
Flu shots have /had mercury and other harmful ingredients.

Also I would never take any implant, breast, face, brain chip any other device :)

I love to change my hair color, so that’s all, other than that I am a natural person, and I believe in myself and that is my decisions to believe in and that is  RIGHT for myself.

Respect others if they are different, but most only if they do what they do guided by their own strong believes not from fallowing the crowd.
  
We live in the world where we have all the information. It is up to us, to make up our own mind.  Always use your instings, or "gut" feelings if you wish to call it :)  

I always use mine and feel happy with my decisions.

Best luck to you all! :)

[vienna13]

not 100 but 100%

[jvalone122554]

Well....I have made a dicision.  I cancled my ICD inplant for Oct 26th and scheduled a second opinion.  I live in Rochester New York and have 2 great hospitals here.  Strong and Rochester General.  They are sister hospitals with Cleveland.  So I made and app. with the chief Cardiologist at Strong Memorial Hospital for Nov 2.  This will help me make up my mind. My goal is to increase my EF to over 35% it is now at 28%.  I'm going to ask that I have a eco-gram done.  What meds are u on?  I see that you have increased from 20's to normal...am I right?  what meds have you taken??  Maybe I can ask for them.....????

[often]

I will be interested in what they say on the 2nd.  I am all for second opinions when in doubt.

A few comments re: Vienna....she follows the diet for heart failure, takes her meds, and exercises...and boy does she ever exercise....I think all of that has helped her improve without any devices...

Her friend Julie that she mentions who died despite the ICD.....very likely would have survived much longer had she been able to get the device sooner.  And in fact, was saved by the device within a month of receiving it....

I think we all need to do what is best for us and our conditions....

[vienna13]

4 and the half years ago I was in an awful condition for about 6 months, bp up and down,(I monitored it at home) very tachycardic, finally I went to the doctor....DX : Heart failure, pulmonary, edema, blood clots, Deleted Cardiomyopathy, EF 20% (or lower one doctor said)they kept me 2 weeks in the hospital , while in the hospital  I was transferred to an other heart institute for  cardiac catheterization and with a recommendation for a possible ICD....one nurse said it is cool, don't worry you need it, you will stay alive at least an other 15 years....dang..I thought: only?:(....it was a day before new year eve ....they didn’t install the ICD in to me in the Heart Institute maybe all the doctors were busy with their getting ready for closing the year....after the cat they sent me back to my local hospital, with a recommendation of medications and treatment intro. ....that said the maximum medication needs, even that might not bring down the blood pressure.  (I know for two weeks I got at least 14 pills, plus shuts ,for the blood clots.....)

so when I got home I was on 50 mg Coreg,10 mg Altace, 0.25 Digoxin 20mg Lasix for a while, my bp was still  very changing sometimes very high, so they doubled the Altace.....I was on these  6 months....
  
after six months the coreg was changed to 100 mg Metoprolol ,the rest stayed 20 mg Altace 0.25 Digoxin,20mg Lasix

until today, they only dropped the 0.5 Digoxin this year

My first ultrasound after 3 months :30-35% EF
The next and stayed for about 3 years: 40-45%.
The last this year normal :over 60%

Diet: I do eat healthy Often is right. 1600 mg of sodium /day no more, better less.
NO chemical, no preservatives, home made food from natural ingredients, never eat in a restaurant, I bake -cook -calculate..... water only from hard plastic.. Still eat good and tasty food....

Exercise, she is right again :) I do exercise a lot, much more then many healthy person, I am actually appreciated for all that I went through.  If I never had heart problem I would be maybe  an overweight unhealthy  person.
  In the first year I was only walking, but most every day, half an hour to 1 hours, I got tired from standing long and my back was hurting.....
---in the second year : one hour  or more walking daily....started light aerobic, and yoga breathing ,that I did in earlier years....
---in the third year: aerobic, yoga, swimming, changed my walking to running (slow) that I did earlier years...
---forth year: running, yoga, aerobic, pin-pong, swimming, ....still walk many places, and transformed from a very active gardener for 8 years to a light gardener...meaning from daily 2 hours I only spend half an hour in the garden including grass cutting on a big land, that I stopped doing lately,

I also took coenzyme q10 on and off...longest at least one year..

Hope it helps and good luck to you !

[jvalone122554]

As a follow up to my ICD delmina.  I had my appointment on Friday November 2, at Stong Memorial Hospital here in Rochester New York.  This hospital is one of the leading hospitals for Cardio problems in the country.

My appt was with Dr. Bisgnano who is cheif of Heart Failure. Upond walking into the unit the sign read Heart Failure and Heart Transplant Unit, my heart started to rapidly pound in my chest.  I finally felt as though this is where I belong.  I met with Dr. Bisgnano and his assitance Dr. Maxim.  After a thorough exame and EKG Dr. Bisgnano began to talk with me about his findings.  I had all my records sent to him from the last 5 years for his review.  He did his homework - and knew more about me then me, I was impressed.

He spent 2 hours discussing the possiable ICD and alternative treatments to make my heart stronger.  With an EF at 28% he felt that the ICD would still be a safety net, while I persued strenghting my heart with meds.  However, he went on to say it was not unreasonable that I wanted to persue treatment through medications to make my heart stronger instead of inplanting the ICD right away.  I told him that I didn't want to be stupid about all of this and if I need it I need it.  He said that I was at the low end of VT danger (28%) which relates to about 2-3% danger of VT.

Dr. Bisgnano recomemded the Muga Test that would meausre the TRUE EF of my heart.  I never heard of the test, and no one ever suggested this to me before.  The Muga is the most accuate test with little to no deviation.  He also suggested to change and introduce different medications that would be more beneficial to improve my heart.  He said that he wants to treat me like a Cancer Patient.  He wants to see me every 2 weeks for an exame and blood work follow up for the next 6 months.  I'm due to see him on November 12 as a follow up.

PLEASE LET ME KNOW WHAT YOU ALL THINK ABOUT THIS.  I FEEL AS THO YOU ARE ALL HELPING ME WITH THIS DECISION.  THANKS JOE

[jvalone122554]

Please read my note and let me know what you think....I'm intrested in what you might think.  Thanks....

[diva2007]

I HAVE A QUESTION I HAVE AN EJECTION FRACTION OF 32% WITH MULTIFORM VENTRICULAR ECTOPIC BEATS BUT SO FAR MY LEFT SIDE IS OK WILL THEY STILL LOOK INTO PUTTING A ICD IN ME. I HAD A MUGA SCAN TWO DAYS AGO TO RECHECK THE EJECTION FRACTION ON BOTH SIDE OF THE HEART SO I'M WAITING ON THE RESULTS I HOPE IT'S NOT BAD.