I want my icd removed

I am the recent recipient of and icd that I fought tooth and nail against. My Doctors overrode my objections with their sanctimonious arguments about how they know what is best for me and implanted the damn thing anyway. Should I have one? Most definately my EF is less than 35%. This is not, however,about treating my "condition",this about respecting the wishes of the patient. What can I do, who can I see or talk to? I completely understand the risk of sudden death due to ventricular tachycardia and I accept that risk and responsibility. How can I make them take it out? My demands seem to fall on deaf ears. PLEASE HELP ME !!!

11 Comments

roger

by jessie - 2008-03-13 09:03:17

i don't understand why you want to have it taken out. how old are you and have you decided to not live? jessie

roger

by jessie - 2008-03-13 09:03:50

hi agian i see you are only 52 too young not to at least try. what is wrong roger? jessie

consent

by VonnieVern - 2008-03-13 10:03:41

Was your ICD implanted without your signed consent? I didn't know they could do that. Were you unconscious before they did the implant surgery?
Vonnie

Dont give up Roger!!!

by Rewiredaussiegirl - 2008-03-14 01:03:07

Hi Roger,
Most of us here wake up everyday and are so thankful to be still alive thanks to modern technology.
Please let us know the reason for not wanting to keep alive!!
I can remember being very depressed the first few months after getting my implant but now I regard my pacemaker as part of me and it is my best friend!!
Give yourself time to settle down and you will get a lot of support and encouragement from everyone here.
I love hearing about how everyone is coping with things from all over the world and have made some great friends because of my pacemaker
We all have gone through pain and please believe us that it gets better everyday.somedays I even forget I have a pacemaker.
Hope you start to think positive about things soon.
Let us all know how you are going . You will get so much support here.

Kay


Patients rights

by ElectricFrank - 2008-03-14 12:03:36

Roger,
I see you are in the US so you have the patient rights we all have. The problem is that in order to take advantage of it you have to be very assertive, and if that doesn't work be obnoxious. One thing I have learned is to not try to convince the medical establishment that I am correct in my decisions. I simply say that I respect their opinions, but I am making my own life choices. You do have one problem at this point.It is much easier to say no to having an ICD implanted than it is to have one removed. In the first case you simply refuse the procedure. In the second you have to get them to do a procedure they feel is wrong.
I have the same question as Vonnie. Did they put it in against your stated will or did they talk you into it. From what you say in your post it it sounds like the latter.
As for the issue of being willing to take the risk, check this out with yourself: if you had it out and then started having episodes of Vtach that causes you to pass out and possibly feel like you are dying what would you want done? The only answer under these circumstances is do nothing and wait to die. Otherwise, you will just be back into having one implanted again. As far as I am concerned either one is up to you as long as you know the real impact of it.
Now, another question: what is happening that you wnat it out. Is it painful, are you getting shocked regularly, is it just something that goes against your grain? If it is shocking you, it can be turned off or adjusted to be less sensitive. If it is painful they should be able to solve the problem.
And finally, most states require a doc to notify the drivers license folks if a patient has a condition that could affect their ability to drive. If you take out or turn it off you could have your license suspended, not to mention injuring someone else.

I hope this helps,

frank

HUH?????????????

by darrell2657 - 2008-03-14 12:03:54

This post is either a joke ,or the man needs mental help as well as physical

14 year old son has an ICD

by Anita - 2008-05-06 11:05:56

My 14 year old son has had an ICD for 16 mos. He has ventricular tachycardia. His heart rate goes over 300 bpm. He is having to deal with adult problems that probably you have not even dealt with. He had an ICD storm in June 07 and was shocked 8 times in twenty mins.A storm is where you are shocked more than twice in 24 hours. With out this device I would not have my son. He is scared to death to live , but he has not given up hope yet. In the last 16 mos he has been shocked 9 times and it has charged 3 other times , but didn't deliver the shock. My son looks up to adults for support. He has so much anxiety. He was scared to walk across the floor when this first happen. He wanted me to watch him sleep, because he was to scared to close his eyes. I truly know how you must feel. my son has had a very difficult passed 16 mos. Please don't give up hope. There are young children that are experiencing what you are going thru, they look up to adults for support. Please just try to stay strong....

individual rights and free will

by joy1 - 2008-05-19 08:05:46

I hope everyone who reads this knows that EP doctors receive their certification as a specialist by how many devices they are able to put in ievery year. You know, I get tired of people being so sanctimonious and asking a person who doesn't want an ICD "why they don't want to live" and that "they should be greatful to be alive". First off, if you haven't an ICD then you don't know what it's like to live with one. They are nothing like PMs. Not wanting an ICD does not equate to not being greatful to be alive.

Having said that, secondly, if you have an ICD and have not experienced an electrical storm then withhold judgment. They are terrible!


To Anita, who has the child who not only has an ICD but has experienced a storm, my heart felt sympathy to you and your son. A storm is a very scary experience and the resulting anxiety and possible PTSD from the experience is totally understandable. I would strongly recommend therapy with someone who specializes working with trauma or specifically heart failure patients. The following website http://health.groups.yahoo.com/group/ZapList is dedicated to people with ICDs and they talk about storms and such. It's not a real active site but the info is helpful to put our experiences into perspective.


Roger, If you want it out, go for it! I did not want mine either. I even told the doctor because she manipulated my family to apply pressure on me to have the procedure. I was later told she did not think i would come back in to have it put in and that it would be easier to get the insurance to pay for it if it were done before I left the hospital. The psychiatrist I see says he is hearing more and more of people being corersed into having devices they don't want. No still should mean no, whether a doctor agrees with you or not. There is such a thing as quality of life over quantity. Good luck finding someone to remove it. Getting the generator out is not as big a deal as trying to get the entire unit out. Find a surgeon who is willing and has the equipment to remove it and then find out if insurance will pay for the removal. It's tricky but involving a psychiatrist who can attest to your mental health or lack there of because of having the device is the trick.

Joy

icd

by ibehurtin - 2008-07-25 03:07:04

roger hello we care about you Ive been there had a major heart attack,a stent and 6 way bypass now this when is it enough ? telling you stories does not help it is your desicision to make sounds like you are drepressed though and should wait a bit please let us know what you alone decide wishing you love and best wishes GOOD LUCK WE CARE!!!!!!!

rotten meds

by ibehurtin - 2009-03-29 04:03:48

hi, ive had icd since sept they keep changing meds and some knock you for a loop one says take this its best the next time they say stop it its ruining your liver! im getting to the point where i dont want any meds what do you guys think can i get by on my icd alone?

Lying.

by terryiswilly - 2018-10-04 09:04:31

I want mine removed. I got my ICD implanted because I was lying. I should never have agreed to have it put in. I had Myocarditis and it would floor me for days at a time. I lied about a blackout and they told me I would need one. I don't think i need this anymore, I'm young 21 years old, I have dreams and goals and this device is holding me back. Don't lie. Simple as that.

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