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,
studies have shown an ICD can reduce mortality. It is really simple and could save your life. Good luck.
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.
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. :)
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.
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.
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.
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.
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.
I wise man once told me that security is like cutting off your right arm so you don't lose it.
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...
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 !!!
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....)
Brat You got it!;) My secret is out......... :)
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.
vienna also will not get a mammogram or a pap smear, even though she is, umm, of the appropriate age for one.
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:
Breast Cancer, uncomfortable, I hate the idea to let my breast to push by that mashie.
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! :)
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.....????
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....
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 !
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
Please read my note and let me know what you think....I'm intrested in what you might think. Thanks....
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.
Hi Joe! I am very even VERY glad for you!!! Isn’t it the most wonderful thing when we find a doctor who is listening and taking us as his first priority when we need that! You certainly needed that doctor. He sounds the best.you could have. All sounds very good to me! Lots of improvement can happen in 6 months. To see you in every 2 weeks are great, he can change your medication as you react for them.
Did he start any new pills yet?
I've heard about Muga, and that how accurate it is, but never had it. I am glad they will do it for you.
You were smart about what you said, after all if you do NEED that ICD you do, wonderful you were able to present your case to him as you see it and feel about it, also letting him know you will trust in his opinion when the time comes to decide ! You are partners in this. His job-your life! Both are very important.
I don't know about VT's much, they will sort it out for you, and that how much is a factor and danger really is in your case....
No question in my mind your EF will improve on the right medication and when you will go back to the GYM .
Let us know about all, it is a very educational case to others!
Take care and keep in touch.
Have you ever heard about hijacking?
If you have a question, you ask a question, meaning: start a new topic.
No question in MY mind that you should get the ICD. Sorry to Vienna, but she is wrong. Yes, your EF may improve but what if you die while waiting? What will your family do without you?
I'm siding with maggie on this one. I ran into an old friend Friday evening, during our conversation I asked after her mother, who has an ICD too. She told me how glad she is that her mother has it because it delivered for her twice, keeping her alive. My device hasn't shocked me with the big one, but in looking at the printouts, it is doing its work calmly and quietly. It may dramatically save you, or it may just quietly help you. You can always take your chances. I usually go for the sure bet.
sounds like you have found a great doctor!! Good for you.
Well you might be bitter about something I don't know but I did ask a question and if you didn't want to read it then you should have pass me by. Have your mother ever told you if you have nothing nice to say don't say nothing. kindness goes a long way and rudeness get you know where.
It is not about me, it is about jvalone ....
Sorry if this is high for you.
If you say something about his case as we all did, same time tell your story as we all do, to compare ,that’s just fine, but you said nothing to him ,so why don’t you start your own question? That’s all.
We had very different mothers. Next time just leave my mother out from it OK?
That speech might be good in you church, not on an online forum, what I said to you was about how to use this board, if you still don't know!
and ofcourse I meant diva with d...not with g..
Show me which sentence I was wrong in? I never said he doesn't need it ! I don't need to explain myself, I already said it all, wont repeat myself, but I think all that I said was correct.
I would never take an ICD.I never said he should not, I said don't do it until he is not ready. I also told my case here, there and everywhere to others to think!!! I just get a cold chill if I think about that: they almost give me one ICD, JUST BECAUSE MY EF WAS 20% or less..... I am very glad they didn’t!!
Today my EF is normal.......THAT’S ALL I TRY TO SHOW. Was it a good or bad from them they didn't rush? It was GOOD !!!:)
Joe not even on Coreg, how dare they just try to push people to get ICD 's before try them on medications. You said he can die while waiting, hmmm that’s true ,I can die in a car crash etc...Today...we all take our chances......
Love Ya too:)
I think Vienna may have just been pointing out that the question re the Muga test and your EF might have more response in YOUR interest in mind on another post about it. Yes, Joe mentioned the MUGA test which is probably what spurred your question. Just post one with MUGA test as the topic and you may be surprise how many more responses you may get.
Well Sorry if I dont do what others say. I thought no one own this board. Well just don't say nothing to me thats all if I'm not talking to you please keep your comments to yourself.
Now Now everyone.....I have read all your comments and appreciate each and everyone of you. But diva I do want this to be about me and my issues, call me selfish...but I need help and I turned to this posting and everyone to help me out. This is why I posted this ICD question. I am so confused about what to do. Diva-----if your EF is at 32% why dont you strength your heart with meds instead of an ICD right off the bat???? At 32% the risk is much lower them mine at 28%. Listen to vienna and the rest of the gang on this page. Take what you want and leave the rest behind. If nothing else they all make me think of what are my next steps.
Thank you all, and please please keep reading my postings and please pleae keep responding to me. We're in this all together......Joe
I know it was your question and you wanted help but you need help and they answer your question. So it is all about you. Diva
Sorry you didn't feel welcome here. Your question is very important and deserves some attention. Please try reposting your question by clicking on "post a question." That way, your question will not be buried within another thread.
I've heard the general rule of thumb is to put in an ICD with an EF at,or below, 35%. When I was having lot of pvcs, my EF dropped and I developed cardiomyopathy. Whenever I read about someone with a low EF and ventricular ectopics, I always wonder if the ectopics could have caused a drop in the EF. Hope your test results are good!
Please don't be dissuaded by some of the comments here. Many of us are here to help you.
Glad to hear you've connected with a cardio who is willing to listen and treat you as an individual patient. Best wishes for good health.
You must feel alot better mentally since you seem to have a doctor that you can trust. That's a great feeling.
I haven't had a MUGA procedure done. I hope it comes back with good news for you. The safety net issue that you and your doctor talked about is a pretty big deal. All of us that have or need an ICD have been faced with the same issues you are. For the most part, my having an ICD has been a FEELING of safety and only a couple of times has it BEEN a safety net. It is those couple of times that I am truly thankful for.
I have been on the 6 month every 2 week trip and it wasn't too bad. Lots of drugs and tests trying to get me stable again. My doctor told me that there is lots of proof that maximizing doses of certain classes of drugs prolongs life. I believe him, although I felt a little like a lab rat for awhile, but now I am glad I did because I feel pretty darn good. Getting the combination and dosage level correct takes some time and you won't always feel the greatest. I was so tired and dizzy sometimes until they got the dosage levels worked out.
It may work out that having an ICD implanted is still the best thing to do and I hope you can make that decision if and when the time comes. IF it does come, trust your doctor to help you make it the right decision.
For me, having a low EF scared the heck out of me for a while. But now I don't worry about it so much anymore as I feel good, can do pretty much whatever I want and don't feel like I am gonna die all the time. Granted, I don't want to do certain things anymore and have learned to set my goals more in line with what I can and think I can achieve. Rather than think I want to run a marathon, I lean more towards walking 2 miles.
However it all works out for you, I applaud your determination to getting it right for you. Good Luck.
One more thing. When I went through the 6 month drug and test schedule the doctor stated that there were drugs and doses that could raise my EF. That was really a secondary reason to taking all the drugs at higher and higher doses. I wanted to tell you that while these drugs CAN raise your EF it might work out that they don't so don't be too alarmed if your EF doesn't go up. And please don't think that drugs alone will change your life or how you feel. You MUST still eat right and exercise regularly
My taking all the drugs didn't raise my EF and I wasn't too happy about that but I can honestly say that I FEEL better. I still eat right and I still walk on a tread mill everyday and I think doing this along with the drugs is what is doing it for me. That and feeling good mentally.
If a person has heart problems or heart disease they really need to be or become an optomist. Positive mental attitude (PMA) is a powerful tool.
It is all about you baby! Looking forward to reading some good outcomes for you.
Thank You all! I can't tell you how I look forward to reading what you say on line here. Please keep reading and posting for me. Help me see this to the end......what ever that may be, an ICD or getting my heart stronger with meds. I'm having my Muga test on the 8th of Nov and seeing the Dr. on the 12th. I'll keep you all posted as to what the findings are. Best to you all for now....Joe
Hi there, sweetie! I didn't mean to upset you but it just is not a FACT that his EF will improve with the proper meds and going to the gym. It might be more likely, but not guaranteed! Just what if he died while waiting? Of course you are entitled to your opinion, ;-), however wrong you are! LOL Love ya anyway!
Diva: of course it IS all about Joe........it's HIS question!
Joe: just because someone has a 32% and you have a 28% EF does not place them at a significantly lower risk of sudden death. EF is not a constant number. Your EF might have been 28% an hour ago and now be 34%. Just as your heart rate and blood pressure changes, your EF can change a little. I think the doctors say +/- 5 % is the rule. So really, 28 or 32, pretty much the same. My doctor says I probably vary between 35 and 45 right now.
Hello, Your comments are intrestiing. I didn't know your EF can change over the course of the day. I thought it only goes up or down according to your condition. Now you tell me it changes all day long like BP? So when you get into a stressfull situation your EF rate fluctuates? I just taught a class and was a little worried about the out come, so I was a little nervous at the start of things. Would that mean my EF went down or up, along with my BP? I know you think I should have an ICD...and I understand it could save my life. This is why I need all of you at this point in time, to help me make up my mind. It should be cut and dry for me but it's not. Are you on meds? Please tell me your history. Joe
Your EF is not going to change as much as your blood pressure can, but it can vary minute to minute. That's why I said what my cardiologist said. +/- 5 % at all times. Many heart centers only give a range when reporting the EF from an echo, not one number.
I have NIDCM, diagnosed June, 2002, with an EF of 15%. I gradually went up to 55% and now have settled about 40 for now. The study proving the efficacy of ICD's for non ischemic like me was not completed when I was diagnosed. Nevertheless, I went in for an ICD, but due to congenital abnormalities (please don't ask!), they were unable to place the unit on either side. At that time they felt cracking the chest was too extreme and opted not to do that approach. Then my EF rose on the proper drugs. As soon as I hit 35% my cardiologist plans on trying again, as the catheters are more flexible today and they feel they could get the right side in. I continue to have the arrhythmias like NSVT despite the improved EF, and I will certainly have it done as soon as I drop to 35%. I live alone, and the peace of mind an ICD would bring me would be invaluable.
Well...... I had my Muga Scan today. It was painless. This is scan is the state of the art. I'll know more on monday when I see the Dr. Question for all of you......Has anyone looked into alternative medicine? I read and artical from a Dr. Bruce in regards to vitamins and cardiomyopathy. It made sense. Please let me know....Thanks Joe
Good news! My Muga San showed that my EF is at 35% and going up. The Dr. feels as tho my problem is my BP. No one has ever said anything about my BP. More Latter.....
My dear Maggie ,you know you never can upset me !!:)
I am very happy for you !! Please keep us posted ! Way to go !!!!
There is the site for alternative medicine: