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Getting ICD Implanted Looking for Information

khissaadove
0 Recommendations

Hello everyone,

I have been diagnosed with FDC Familial Dilated Cardiomyopathy with an EF of 27%. I am being advised by my cardiologist to get an ICD to prevent sudden death from a cardiac event as I have had 2 brothers die from SCA. One was 22 and one was 32. I have spent a lot of time researching and I am concerned about some of the side effects. I am hoping that I can get some information from someone here that may help me to decide. I am mainly concerned about the side effects they don't tell you about, which would be the ones based on personal experience and not out of a text book.

I was also wondering if anyone had the MTWA test from Cambridge.

Here is the website: http://www.cambridgeheart.com/content/Clinicians/Overview.shtml

I am very reluctant to get the ICD because I am concerned that it will have bad side effects today and in the future. I would potentially have to wear this for 10 to 40 years (with any luck). My understanding is that this is preventative, but if the MTWA test can tell me I won't have a SCA or the ESP study then I am on the fence to say no to it and take my chances. I really am afraid to just blindly say ok to this procedure based on doctors "preventative" advice.

Can anyone guide me in the right direction please?

Thank you
Sherri

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34 replies

Debra71508

Sherri:

You are wise to think it over but you need to also look at the odds of survival (& without brain damage) should you have an out of hospital SCA. The odds are very low. Under 10%.

You also know that sibling medical history is the greatest risk-relevant data we have for SCA. With 2 young brothers (22 and 32 are horribly young) dead of SCA, I'd say your doctors are not over-reacting in suggesting an ICD.

Finally, the fact that you have FDC with an EF of 27% pretty much is the corker here.

If you want to search for the 1 in 1,000 or 1 in a million odd-ball side effect and focus on THAT as an important data point for your own decision in light of the factors you've provided so far, you are making a serious, massive, logical error. The rare negative ICD outcome can't possibly outweigh the odds you have of suffering and surviving SCA.

This is one of those areas where the education and training a professional has just can't be equaled by internet research no matter how sincere and personally invested the researcher is. If you want a second or third of fourth medical opinion - get it. But do NOT suppose for a minute you will come up with a "internet based" data set that could or should outweigh the doctors in this case.

On a more personal note, my husband was not given an ICD after his first SCA and suffered a second just 5 months later. He survived both but it is only because of the ICD he was able to get over his depression and I was able to move past my anxiety. He has had NO side effects and I've talked in person and via the internet to dozens of men and women who have also reported clear sailing.

Maridee

Hi Sherri,

Welcome to this site. I hope it helps provide answers to the questions and concerns you might have.

I will be the first to say that I do not know what the MTWA test is. But I guess I wouldn't really care what the test showed because to me the answer to your question is a no brainer.

You have had 2 siblings who have had SCA and died at a young age. You have an EF of 27%. What more do you need to know? I am sorry for your loss but most of the people on this site have never had any family members experience a SCA except their loved one, themself or a 1st degree family member. We had absolutely no warning and no doctor told us to beware that it might happen--it just did.

As a spouse who saw her loved one lie dead and unresponsive for 8 minutes, let me tell you the side effects from a SCA and survival are far worse than anything he has experienced with his ICD. To have such a history of SCD in your family and not want to prevent your own death from a SCA "Because you are concerned about the side effects from the device" is like playing russian roulette. If we had known that my husband might have a SCA and it could have been prevented with an ICD, there is absolutely no doubt in mind that we would have had one implanted.

As far as side effects I guess when one lies dead from a SCA it really doesn't matter. When one has cheated death once and an ICD will enable him or her to cheat it again, side effects don't matter. Living life to its fullest with the security of knowing that your heart is protected is all the side effect we care about.

Good luck with your decision. Sorry if this response sounds harsh but you have to realize that most of us never want to experience a SCA again in our life. A SCA is life changing, life altering. That is if you live. If we could have known and prevented it, we would have done it in a heart beat.

Maridee

Bogey

as a survivor of a sca and a proud owner of an icd for almost 3 years let me tell you its peace of mind knowing that its there. You don't wear it, its implanted under the skin and really don't know that its there. It hasn't effected any of my activites at all. I play golf about every day and do all the things I use to do. The only draw back is the surgery and the recovery. You can't lift your left arm above your head for six weeks. The only problems that I have had with it was a bad lead and had to back under surgery to replace it and that was over two years ago and haven't had a problem with it since. Hope this helps you Dan

ckspring

Sherri: I totally agree with those who have replied before me. I had an SCA at age 48 and with no one having had an SCA in my family. I do not remember a thing about it. It is as if it didn't happen, or happened to someone else. Anyway, my EF 6 weeks later was 30-35 and they said I needed an ICD. I had it implanted a week later. Four weeks later, my EF was up to 52%. I have considered having them remove the ICD (or at least the battery, and disconnect the leads) when the battery dies, which it will after 5-7 years. However, even though I am doing great and functioning 100%, I am starting to understand that removing it would be stupid. It is an insurance policy. I survived against all odds the first time. I do not think my odds of surviving another SCA are likely to continue without an ICD. I have had the ICD for 3 years now and it has not needed to work, but you never know. The only side effect is a slight soreness in one area and occasional arm muscle tenderness. A small price to pay for survival. With your family history and EF, I agree that this is a "no brainer." I can't imagine any physician telling you differently. That said, the psychological impact is something you should think about, and I believe is what may really be prompting your concern. It is hard to be young and have such a "serious" device implanted -- it makes you feel like you are old before your time. It took me quite a while to accept that an ICD does not mean you are old and you do not have to act old. I am very active and at my nuclear stress test last week I reached 11.8 METS. My cardiologist told me that a person my age without heart disease generally can do 8-10 METS. You may want to get some counseling to help you through the psychological adjustment. Because I don't remember having the SCA (or about 5 days after that), I was not like the typical person who is so scared to have another SCA that they will do anything, including have an ICD implanted, to avoid another one. I think that made the adjustment harder for me, but I think I am there now. It really is no big deal. Good luck and keep us posted.
Cindy

wdiane

Sherri,
I am having to join in with the others. My husband had an arrest while bicycling and if not for people stopping and giving help he would be dead. I never never want to go through that experience again. My husband had a slow recovery but now he has an ICD and is makeing a strong recovery. He is able to get on his bicycle and I don't have to fret over him doing it. It has helped my anxiety immensly! He has had no side effects-it healed well and he is doing so good. He had his 3rd rebirthday yesterday!
Diane

Paul_Pakusch

Side effect with an ICD: Most likely some occasional discomfort.

Side effect without an ICD: Most likely death.

sgriggs89

I personally haven't experienced unexpected side effects from having an ICD implanted after my SCA in early March. I've mentioned to others that I never expected how often, as a mother of two young kids, I would be accidentally kicked, headbutted, elbowed, or shoulder plowed at the site of the ICD.

A bit of discomfort every so often hasn't been a really big deal after surviving such a brutal, horrific, near-fatal event. I now refer to an SCA as a "great white shark" that I don't intend to tangle with again without the assurance that an ICD provides.

Please don't let minor discomforts that are going to be a component to anything in life worth having factor into your important decision. Sure, some unfortunate folks will suffer more pronounced, undesirable effects from having an ICD implanted than I have experienced, but so far nothing negative I have read about compares to what an SCA could do to you.

blake76

Hi Sherri,

7 months ago (aged 32) I had a SCA, luckily I was in the right place at the right time but that's another story.

I had an ICD fitted a week later, I wasn't really with it at the time but my family helped with the decision as I was still recovering from the ordeal.

My fiancé only started to relax slightly after the ICD was fitted as this gave everyone peace of mind that if it happened again and I wasn't luckily enough to be in the presence of skilled people, I would have the ICD to keep me alive.

As for side effects, for me personally they are pretty minor really. I've been told not to scuba dive any more (although I am looking into that!) and I cant comfortably sleep on my left hand side.
For the first couple of months my left arm movement was limited slightly and the implant ached for a while but that is all a distant memory now and I'm getting on with life just how it was before the SCA.

I think you have an easy dissision to make but I think Paul_Pakusch above has concisely summed it up.

Hope that helps

mery

Am unfamilair with the test you cited as well. I just want to throw my 2 cents in. I'm 5 1/2 years into my first ICD, and am extremely thankful for it. I've not had any bad side effects, really any at all. The occasional pain, or if I lay wrong on that side or whatever.

With your family history, I definately would stop looking for reasons to not take sound medical advice. The bad side effects of having an ICD far outweigh the side effect of not having one. Umm...some uncomfort from time to time, or being dead. I choose the uncomfort.

Good luck on your search.

khissaadove

Debra,

First let me say that I am sorry about your husband, but very glad he survived :) This must have been a terrible experience for you. No doubt a life altering experience to say the least.

Let me also say thank you for responding to my post. No matter what the answers have been, I appreciate any advice. It opens my mind to other possibilities and for that I am very thankful.

I agree with you about the internet searching. I use it as a pointer really and not as my bible. I follow-up with questions for my cardiologist and electrophysiologist to make sure I cover my bases. I see it as a door opener more than a door closer. Honestly, I have learned quite a bit about FDC from the internet and it helped me to formulate questions for my cardiologist.

Yes, my siblings have a great deal to do with the electrophysiologists recommendation for an ICD. They are also the reason I sought out medical treatment, which thus far has saved my life.

What concerns me is not the small side effects like arm discomfot and pain, but the larger picture. One of my biggest concerns is the longevitiy of the device and it's impact on my already deteriorating heart tissue from the FDC. I am told by my doctors that I have approximately 10 years before a heart transplant will be required. Will that 10 years be cut to 5 because this device is a foreign body and my heart is fighting it's existence? Will it facilitate my heart in the creation of more scar tissue? If there is a test that I can take which has a 98% accuracy and can give me 2 or 3 more years, should I risk this? I have not heard or seen any stats on the long-term side effects to the heart tissue and specifically people with FDC. Honstly, I know there are more side effects out there that I don't know about and I want to learn as much as possible. Some of these side effects can only be told by the people live with it every day. The answer, in the end, for my specific concern may be "unknown". Perhaps I will have to live with this answer. What I won't do however, is give up the search for information :) Thank you again Debra for your advice. Words can't express how much this has helped me.

Kind regards,
Sherri

khissaadove

Maridee,

I am sorry to hear about your spouse and I can only imagine how terrible that was for you to watch him for that long. The emotional side effects from that moment alone would be enough to scare anyone for a lifetime.

First let me say that you are not being harsh. Harsh is the reality I live in today. Nothing can top that... not even Jerry Springer :) I welcome any and all input ... good .. bad.. I don't care what kind it is because at the end of the day I am fully aware of who I am and where I am going in life. I listen carefully to what others have to say simply because I am 100% sure that I do not have all the answers and never will. I like to keep an open and objective mind.

I understand what you are saying about the family history and why risk it given this information. Trust me this goes through my mind every day. I am the youngest of six children. My brother Frankie died in 1979 at 22 and my brother Luke in 1995 at 32. Frankie didn't see it coming, but Luke knew there was something wrong. In both cases they were very fit, but were in extreme heat and working conditions. I believe this is what triggered the SCA, but the FDC is the catalyst. It seems that as this gene goes down the family tree it has less of an effect on my family. That isn't to say any of my remaining siblings are safe, but we are all fully aware of the potential for sudden death.

I am going to the Miami university for some genetic testing, which I hope will help my family and I. I am also researching Stem Cell implantation because I am hoping that I can find an alternative to the heart transplant. My biggest concern is this defibrillator may further deteriorate my already weakened condition. Time isn't my friend at the moment, so any acceleration of deterioration would be detrimental to my overall condition. I understand what the doctors are saying, but nobody has been able to give me this answer to date. I would welcome any advice.

Thank you for responding to my post. I really appreciate your words and they were far from what I consider harsh.

Take care
Sherri

khissaadove

Dan,

Thank you for responding to my post. Congratulations on your survial of the SCA. I am glad you are doing so well with your defibrillator. I heard about the post surgery requirements from my doctor as well. Thank you very much for the information. It is nice to meet everyone here and hear their story.

Take care
Sherri

khissaadove

Cindy,

Wow, what an incredible story!! Thank you for sharing this with me. I am so happy for you with an EF of 52%. You must be over the moon. I know I would be. It has become very clear to me now that anyone who survives an SCA has just won the lotto. I can only hope I am this lucky.

I realize I have the option to make decisions that could prevent this, which for many who have experienced it and survived were not given this option and wish that they had been. I can understand what the fear of an SCA is without having one simply because I have survived to see both my brothers die. While I am very fearful of an SCA, I have to keep a cool head to make these life changing decisions. I also realize that time is of the essence and the decisions can't wait for very long. I need to be very careful with my choices because they could speed up the deterioration of my heart, or at least that is one of my biggest fears. I want to make an informed decision that I can say 5 to 10 years from now "I did everything I could to make the best choices at that time" and live or die with that decision. Some people see this as a "no brainer" and I agree to an extent that it is just that; however with any foreign body there is consequence to living tissue. The question remains, for me anyway, what that consequence will be in the end.

I understand how you felt with regards to the psychological impact, but honestly for me it plays a different role. I don't see this device as something that makes me feel older as much as I view it as something that may have the potential to take my life away or what years I may have left anyway. Still, given what you said, I think seeing a counselor is good advice simply to deal with these emotions. I would like my husband to go too because I think he is suffering some anxiety and fear as well.

I have investigated getting a defibrillator at home. My place of employment currently has one on each floor with 4 people on my floor certified and over 20 in the company are certified. My husband and I are taking CPR/Defib classes too. If my decision is not to get the defibrillator, I am hoping these precautions will help in the event of an SCA.

I am also placing a lot of faith on the MTWA test, which I have tomorrow. This test is 98% accurate. If it reads positive then it is likely I will get the defibrillator, but if it reads negative I have to make a choice and honestly I don't know what that choice will be at the moment. I do know that talking with everyone here has helped me a great deal. I am very thankful for the time you took to answer my post and for everyone's feedback. Thank you again.

Take care
Sherri

khissaadove

Diane,

Thank you for your reply and I am so happy for your husband's third re-birthday!! What a great expression that is too :) I love it!!

In your post I can see the fear that my husband is going through and this probably hurts me the most. He supports my decision no matter what it is, but I know he is afraid too. We are just taking it one day at a time right now and with any luck I will make the right choices.

Thank you for your post.

Take care
Sherri

khissaadove

Paul,

You must be an accountant or someone who is analytical. I say this because I am an accountant and this sounds like a summary I would put together at Month End.

Positive Net Profit = we work tomorrow
Negative Net Profit = we may all get fired

Well if I was a man of course (no offense). As a woman, I am a bit softer around the edges and perhaps a bit more chatty.

Hopefully you have a sense of humor too :)

At any rate, I appreciate the summary as it puts it in a quick concise perspective. Thank you for taking the time to read my post and responding. This has been a great experience and helped me a great deal!!

Take Care
Sherri

Paul_Pakusch

Sherri,

Actually, yes I am doing some bookkeeping and taking courses to get a degree in accounting. I'm not usually that blunt in my responses, but this is an issue that I feel very passionate about...and that comes from personal experience.

I was with my wife, Mary (also on this forum) when she had her first cardiac arrest. It was very shocking to me to see how fast she collapsed, with NO warning whatsoever, and an obvious need for help that simply could not come fast enough. What happened over the course of the next few minutes ended up saving her life. The fact that she is alive and well is simply a miracle. Even her cardiologists have used that term.

She left the hospital 10 days later with an ICD. A year and a half later, Mary was alone when she had her second full-blown cardiac arrest. The ICD saved her life.

Having witnessed her first SCA and seeing the results of the second SCA have convinced me that it's not even a question to discuss when a doctor tells you that you need one. The choice comes down to, "Do you want to live or not?"

On a lighter note, yes, I do have a sense of humor and so does Mary. The nice thing is that we actually do joke around quite a bit about this whole situation. I could probably start an entire forum about some of the funnier moments about all this. Maybe I should; it would lighten up this website a bit!

khissaadove

Bob,

That was a great story and thank you for posting it. It is nice to hear the other side of the coin and thank God there is always one in the crowd. You can't get the whole picture unless you see all sides. Someone once asked me "why do bad things happen to good people" and my response was "so you can tell the difference and appreciate the good". Life simply isn't worth living wihout this distinction because you don't know you are living.

I can agree with you that quality of life has weight in my decision as well. The doctors can only give me their best information and I have to sift through that to make my decisions. Most of the doctors have been down this road with their patients, but not actually on the path themselves. They don't actually live the consequences, which in my opinion living it adds value and meaning to the decision.... without living it you risk nothing. Which is part of the reason I have opened my mind and why I am seeking information from those who really live it every day like me.

The EF was through an Echo if that helps. I am not sure how that is calculated. I have had a MUGA before too (over 1 year ago) and I was told that this is more accurate. At that time the cardiologist averaged the two MUGA and Echo to come up with a 35% EF. The Echo I had in July was 27% at the Mayo clinic in Jacksonville. I am told I will have a MUGA and an EP study the day before the surgery if I go through with it. This MTWA was a test I requested which doesn't require penetration into the body and it has a 98% accuracy (so I am told).

This is what was on the report:

My left ventrical is mild to moderately enlarged, severe decrease in left ventrical systolic function.

Diastolic dysfunction Grade 1 - abnormal relaxation

Mild mitral valve regurgitation

Trivial tricuspid valve regurgitation, but were unable to evaluate right ventrical because of this.

Most everything else was normal.

New York Heart Class II

Hopefully some of this makes sense... not exactly sure I answered your question, but if not feel free to ask another.

I can't tell you how much I appreciate your post and the time you took to write it. No disclaimer needed for me as I see this as information for compilation no decision. It may help me along the way, but the final decisions I make are thought out using muliple bits of information and hopefully they end up being the right ones :) That is my disclaimer for myself :)

Take care
Sherri

khissaadove

Thank you for your post. I appreciate the feedback on your side effects. It sounds like you lead a pretty busy life and I am very happy that this doesn't seem to have taken away from that. I don't know if you read any of the other posts, but my concern is more for the serious side effects. Mainly the longevity of the device and it's potential impact on my already diseased heart. It is great to hear that most suffer very little trauma in every day life. Honestly, it is just what I need to hear. I just wish I could talk to someone who has FDC and has had a defibrillator for a long period of time. Perhaps they could give me some insight as to what the long term side effects might be.

I am sorry it has taken me so long to respond to your post. I have had quite a few people respond and I want to make sure and get back to everyone. This is a great site and has helped me tremendously.

Thank you
Take care
Sherri

khissaadove

Blake,

Yes, that does help and thank you for responding to my post. Any information is better than none. Sorry about your SCA. It sounds like you were also one o the lucky ones. Thank you for sharing the side effects you have been experiencing. I have heard many similar to that as well. My biggest concern, because of the FDC, is that the scar tissue in the heart which is created from the foreign implanted device will furhter deteriorate my condition. The heart tissue forms scar around the leads and it becomes part of the heart tissue. Hopefully in my research I will find the answers.

Thanks again for your post.

Take care
Sherri

khissaadove

Mery,

Thank you for your post. I really appreciate any input that I can get good or bad. You mentioned you had an ICD, but I wasn't sure for what reason. Did you have an SCA or was it a low EF that prompted your ICD implantation? The reason I ask is because most here have ICD's due to a prior SCA.

You are right that my family history is compelling, but the FDC is also just as compelling which is the reason for my cautiousness. Doctors are very intelligent human beings, but one thing I never lose site of is they are just that... human. They make mistakes every day like you and I. I trust this doctor and I don't discount his recommendation, but I also realize that from the day I was born I have had this risk. I am 41 years old and for most of this time I have lived without the keen awareness of this disease and what will happen to me. More importantly I have never experienced a SCA. The only argument that brings me to this alter in life is that my EF is now 27%. Otherwise I wouldn't even consider the procedure.

Originally when my brother Frankie died in 1979 we thought the military was crazy. It wasn't until Luke died in 1995 that I realized there really was something wrong. I went to the doctor at that time and he looked at me and said "you are a 28 year old woman what makes you think you have a heart condition". I looked at him and I said "because I am short 2 brothers, why do you think". God I could have reached out and strangled that man at that time... from then on it was doctor opinion after doctor opinion and honestly they have all been different. I am still not 100% sure that I have the FDC, just that the latest doctor says I do. This is the reason for the genetic testing.. but that is another story.

So you see, my experience has been that doctors, while most are really trying to get to the bottom of things, are just giving it their best educated guess in the window of the 15 min to 1/2 hour you spend in their office. I don't want to bet my life on just that... I want to make sure this is the best decision I can make for myself and live or die with that decision. Yes, I know those may be strong words, but I am prepared to die with the decisions I make as well. One thing I can assure you is those decisions are not based on comfort. If there is one thing I have learned through all of this over the years, it is that I have to get as much out of life as possible and that my future will be anything but comfortable.

Thank you again for your post and taking the time to read mine. I really appreciate any and all feedback.

Take care
Sherri

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