Want my pm turned off!

There is not a lot of data on whether or not I have the right to have my pacer turned off by choice. So I am wondering if anyone has the answer to this. It basically boils down to law and ethics.

Almost two years ago, I had my pm implanted. I have experienced worse (yes worse) quality of life with my PM. I am 30, and I want more. I want this thing turned off.

It seems pretty logical to me to ask to have it turned off to see how well I can function without it. Seeing that I have more chest pain with it than before, my sleep patterns have been horrible, my energy levels at an all time low (I take b12 injections weekly) and I am just plain fed up with it.

On top of this, I am a single mother. I need energy. I can't be sleeping 10 hours or more per day. I'm a nurse as well. I have had everything else checked and my numbers are great. It has to be my pacer.

How hard is it to find someone to turn this damn thing off? I'm not asking for removal, just switching it off. I'm willing to try on a temporary basis as well, i.e. monitoring monthly and so on.

Any advice is appreciated! Thanks in advance!

6 Comments

Being in the nursing industry

by Theknotguy - 2015-11-23 08:11:36

Being in the nursing industry I'm sure you understand what you are asking. As someone who has close associations with doctors I'm also sure you understand how difficult it will be to get a doctor to actually turn off the pacemaker. They don't have on/off buttons, so I think the only way to turn it off is to have it removed.

Your point about it boiling down to ethics and law is well made. As you well know, doctors get extremely reluctant to do things that will jeopardize their medical license.

One person on this forum let her battery run out. Then refused to have a new one implanted.

Another person on the forum actually had their PM removed, then needed a new one implanted about five years later. You'll have to use the search function on this forum and see if you can find the posts. Of the two, I'm thinking the person who had it removed would be your best option for finding what steps to take.

Another option, at least in the good 'ol' US of A is to find yourself a lawyer who will help you get a hold harmless agreement. That way the doctor supervising and the tech performing the procedure will be absolved of any wrong doing in case something goes wrong. May be difficult to get but I've seen stranger things done.

The other questions that come to mind are the AMA (Against Medical Advise) and what your health insurance will have to say. You can suddenly find yourself way out in left field with no one willing to do anything. We have the Good Samaritan law in Ohio but I don't know what happens when someone wakes up and refuses medical treatment.

Before you go through all the legal mess, fights with your medical insurance, and refusal of medical services, I'd have another go at finding an EP who would be willing to help. Worst case scenario is you having the pacemaker turned off, getting into a crisis situation, then not having it turned on in time to save your life. I'm not willing to take that chance with my own life.

The other question in my mind is why you got the pacemaker in the first place. Is there a sound medical reason for getting it? If so, you are asking a doctor to do something that will kill you. You'll never get an approval for that.

I sincerely hope you can find an EP who is willing to listen to you and either help you or give you a good reason why things can't be changed.

Let's slow down a bit

by Grateful Heart - 2015-11-23 10:11:13


Sarah, have they made any adjustments to your PM since it was implanted? Why did you need the PM? Diagnosis? Are you taking any meds? Some can cause lack of energy. A lot of unanswered questions.

Sometimes a setting for one person is not correct for another. It can take more than a few tries to get it right for each individual. You may be aware of all of this but just in case.

A 2nd opinion may be helpful or an exercise stress test for your Doc to adjust your settings. Just some things to consider.

Grateful Heart

Shut down

by Cabg Patch - 2015-11-23 10:11:23

There is no on/off setting for a standard pacemaker, however they can set your pacing rate to a very low number which has the same effect. As for doing that, and or removing the device, many states have laws governing that, in fact in Arizona, a doctor is prevented by law from removing or shutting down a pacemaker (not the defibrillator function, just the pacer) on anyone who is pacemaker dependent, even terminal patients.

So for example, my advanced directives to shut off my CRT device cannot be executed by law because I am pacer dependent. Shutting down the device is considered euthanasia

Your best bet is to ask your doctor, then based on the answer contact a lawyer who specializes in the medical area.

ditto Grateful Heart

by Tracey_E - 2015-11-24 05:11:55

Why did you get it? Sometimes it's a fix and we feel better, sometimes it doesn't make us feel better but keeps us safer, sometimes it's just a small piece of a bigger puzzle. As GH said, lots of things can cause the symptoms you describe so don't assume it's the pm. Do you know how much you are pacing?

You might have a better chance of asking them to turn it down in increments. Start by lowering the settings a bit and see how you do.

What's going on?

by Gotrhythm - 2015-11-24 06:11:33

I hear a cry for help and my heart goes out to you. Trying to make sure I understand what you're saying, I've reread your post several times. I keep coming back to your sentence, "I've had everything else checked out and my numbers are great, so it must be the pacer."

Exactly what do you think the PM is doing that is causing your symptoms? I ask because I can remember my extreme frustration as I felt worse and worse, while I was told everything was normal, fine. Great numbers all around.And of course I was told the PM was working fine too. Still, I intuited the problem was the PM. I certainly wondered if I would be better off without it.

In my case it turned out that the PM WAS working fine but its settings weren't right for my heart and my condition.

I echo the advice others have offered. Find a good PE. Seek a second opinion. If you still don't get answers, go to a major university teaching hospital where they see all kinds of rare and unusual conditions. Duke is where I finally got help.

I absolutely uphold your right to reject the PM but I think there are probably a lot of steps between where you are and that sort of last ditch effort to solve the problem.

Please let us know how you are doing.

PS

by Gotrhythm - 2015-11-24 07:11:52

I forgot to add that in my case, it turned out I had pacemaker mediated tachycardia. Turning off the PM wasn't the answer, but turning off the lead to the ventricle, was.

You know you're wired when...

You run like the bionic woman.

Member Quotes

I can honestly say that I am feeling absolutely amazing!