Aa
ICD
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.
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.
I am very happy for you !! Please keep us posted ! Way to go !!!!
There is the site for alternative medicine:
http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.7.html
There is the site for alternative medicine:
http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopathy.heart.failure.7.html
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.....
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
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.
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.
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
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.
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.
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
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.
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.
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.
Pusher
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.
Pusher
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.
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.
Connie
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.
Connie
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
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
Thank you all, and please please keep reading my postings and please pleae keep responding to me. We're in this all together......Joe
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.
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.
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:)
V.
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:)
V.
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!
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!
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.
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.
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