Ethics?

Hi, I recently had a PM put in, my first, and the whole process was done under emergency conditions, with 11 days in the hospital. I had 3 failed procedures and a drug reaction before I had an AV node ablation and a 100% paced PM put in. This was done while I was out of state traveling.

When I got home I made an appointment with the electrophysiologist associated with my cardioligist’s practice. Without any preparation or comment to me, he turned my pacemaker off! I had major weird sensations in my chest and asked what was going on. Then he goes to reset it and says "oh, this is tricky." The implanting surgeon had done an unusual configuration that the Maryland doc found to be tricky.

I survived. But, I have no trust for this doctor and because he did not give me the consideration of telling me what he was doing I could have had a major problem. The configuration is considered a challenge and the St. Jude Tech said she wouldn’t touch it because she could see it was so unusual. I’m still upset that the Hopkins doc just went ahead and did not consider that I was a partner in my own health.

I’ve felt out of control with this whole experience and this just adds to the anxiety I’m feeling. Is this considered an ok medical practice-- to turn off one’s PM to see how it goes, and to not prepare the patient?

M’Liz

11 Comments

Ethics

by Pookie - 2012-04-02 03:04:06

Hi and welcome to the club:)

I really don't think your pacemaker was turned "off" but it was probably turned down really low to find out your intrinsic rate (your own rate without the aid of the pacer) which seems to be common practice or part of the pacemaker interrogation. Pacemakers can't be turned off. With that being said, (for future appts) - always ask them to tell you what they are going to do BEFORE they do it, then you won't have any surprises.

In my opinion you should have a copy of the print out of your settings from Maryland ~ that way you can always have them since they took the time to get the settings the way they should be, then you could always give the Hopkins doc a copy of what they are/should be.

I too have felt out of control or intimidate during my pacemaker interrogations, but this is the time in which we should be taking charge as it's our body/our pacer. Sometimes we freeze and just let the medical professionals do whatever without uttering a word. It's all new to us, but again we have to stop them and get them to tell us what they are about to do BEFORE they do it. It's your right as a patient - so ask:)

You are correct: you are a partner in your health, so next time don't let them touch you without laying out the ground rules first.

Remember: You are the boss!!!!!!!!

Pookie

I agree with Pookie

by janetinak - 2012-04-02 04:04:56

I had my PM turned down really low by a PM tech without telling me & before my regular provider came into the room. And you are right it feels really weird
( can't think of another word but weird doesn't describe it). When my provider came into room as I was asking what tech doing, provider said she is 100% dependent (due to AV node ablation). Never saw that tech again & I now announce the am a 100%-er when told they are going to slow PM down. It gets better.

Janet

Speak up

by bjbumblebee - 2012-04-02 06:04:52

Everytime someone goes to interogate my pacemaker I right away ask them if they are going to lower the rate and to tell me when they do. I make it very clean each time even if it is the same person every time that I am very sensitive to the rate decrease and it seems once they know that they do the test very fast to where you almost do not even notice it. With that said, when they do drop the rate, try to relax and breath slow deep breaths. It will help.

Bonnie

Tell them

by ebfox - 2012-04-02 07:04:12

I think Janet hit the nail on the head. Before you even sit down in the chair, you say "I had an AV node ablation and I am 100% dependent." Some techs are more experienced than others, don't assume-

One note, every time mine has been interogated, when the tech places the interface device over the PM, I feel an odd rhythm for a few seconds. The doctor said that this is normal, it is the magnetic interface "shaking hands" with the pacemaker.

Good luck,

EB

Same as ebfox :)

by Heidiglassmeyer - 2012-04-02 08:04:36

My first few interrogations really scared me. Fortunately I also had great tech's who explained when they were lowering, increasing, etc. and explained how I might feel. Like ebfox, for some reason as soon as they hook me up I get a fast thumping/tingling feeling at the PM site for a few seconds. First time scared the pants off me (AV node also ablated) I thought for sure he broke it, haha! Anyway, now I know there is nothing wrong but it sure did freak me out. It is unnerving and i can completely understand how you must have felt.
There has been great advice given above! It took me some time to really take charge during my interrogations. Now I expect to discuss any changes before they take place with the tech and get a copy for my records.
Sounds like you've had a tough few weeks and wish you the best with your new PM from here on out :)

Take care,
Heidi

Stand up for my self!

by ldebaugh - 2012-04-02 10:04:37

Dear Pookie, Janet, EB and Heidi,
Thank you for your comments. I'm usually an assertive person but this whole experience has thrown me. i will definitely be more prepared next time.

I do really appreciate the things you all have said to me. Very glad I've found the pacemaker club.
Thanks!
M'Liz

Stories

by ElectricFrank - 2012-04-03 01:04:16

First off don't believe the stories you are told by the docs or techs. They know you have no way of really understanding what they are doing so they feel perfectly free to make up a tall tail. I'm amazed at what they say.

Actually, when they put the "magnet" over the pacer they usually start the test immediately. My experience is that they rarely stop or cut the pacing way back. I had to ask for the test and have only had it done once. What you likely feel during the test is your HR being cycled between a low rate and several higher rates while the pacing voltage threshold is being determined. In my case my HR is raised to 85bpm and then it skips a few beats intermittently, followed by a burst at 100bpm. This is followed by one beat at 55bpm, and then a return to normal pacing.

All these sudden changes in HR do produce a "weird" feeling, but are no problem if you don't panic. The tech can only tell you when the test is to be started, but after that it is automated by the computer.

Hope this helps.

frank

truth or lies?

by ldebaugh - 2012-04-03 12:04:18

Dear Frank,
It sounds like you subscribe to a version of the "House" philosophy-that everyone lies.

Whether it's turned off or down, the EP should say what he's doing. The EP who put in the PM (in Florida) told me it was an unusual configuration and not to let anyone touch it but another EP.

So after the Maryland doc makes me feel wierd, I ask what he's doing, and he tells me he turned it off.

Then (and I left this out of the earlier post) he says, "Ohh, this is tricky!" then I had several more minutes of watching him make many more changes at the computer with a very worried look on his face. And during this time my heart is really struggling and making clicking noises, spasms and big thumps despite the AV node ablation as well as a pulmonary vein ablation 2 days prior to the AV ablation. I think he found out it was an unusual configuration and he was struggling to get me back on-line. So much for the egos of Hopkins docs. I won't be seeing this doctor again. It reminds me of the joke, what do they call the guy who graduates last in his class-"Doctor". Of course if he's from Johns Hopkins, presumably he wasn't last in the class, but just has a bigger ego.

I will ask questions based on your comment because I do want to know the truth. Thanks!
M'Liz

Frank know his stuff...

by bombay gal - 2012-04-04 01:04:28

I am a 2yr rookie, but never forgot the way I was screwed the first time.
Thanks to Frank, I took charge, now I decide who takes me and ask for the print out eveytime, to make sure they got it right...its funny how much you learn, when its your body/heart on the line :)
In my case, everytime, they pace me, I break out in a cough (?)
But thanks guys, without you all, if the heart wouldnt have got me the stress from the PM techs would have.

Now that you mention it!

by ElectricFrank - 2012-04-04 12:04:08

M'Liz,

Everyone doesn't lie. Some are just incompetent! LOL

As someone who has spent a good chunk of my working life as a field service engineer, I can appreciate (but not justify) what the docs get into in dealing with a patient. If you look at my description of what happens when the computer is attached to the pacemaker (in my previous post) it took me a whole paragraph to try to say it simply. And then half the patients won't get it anyway. So instead of explaining that the pacer wasn't really "turned off" it is easier to use that as an explanation for the feelings. I'm not justifying it though. What they really need to do is to let the person know that they will feel some uneasy/uncomfortable feelings, and that they are just a part of the test. While some people will freak out at the slightest thump this would help the majority to better deal with it.

Now for some of the other statements. There is competition between EP's and cardiologists for business and like any good salesman they will warn you about the other. Ever had a service manager at a car dealer tell you that your car is too complex to let anyone else work on it? Same thing. Salesmen/women are trained liars.

As for the Johns Hopkins doc all he needed to do before making any changes was to access the settings in the pacer and store it in the computer. Then it is just the touch of a key to restore it if necessary. With the Medtonic programming computers they are able to set them up to stop pacing by holding the space bar down. Just let go of the key and everything returns to normal. No "struggling to get you back on line". While you have a different pacer my guess is that it is an FDA requirement to have a fail safe way to control it.

So bottom line is to make your wishes known before they even put the magnet on you. I have a checkup next Monday and I will have a talk with the rep before we start that NO changes are to be made without my OK. Then I get a printout at the end and look it over before leaving the office.

best wishes,

frank

Pacemaker Removal

by doucettemary - 2012-04-07 12:04:20

I was diagrosed with complete heart block with a heart attack. A pacemaker was put in then. At my 6 week check up I had used the pacemaker once. About a month after that I developed an abscess behind the pacemaker and had to have it taken out and reinserted on the other shoulder. While I was without the pacemaker, I again went into heart block and had to have an extermal pacemaker inserted through my groin up in to the heart. Than I had the permanent pacemaker put in a day later. Since than, at my check ups it shows that I have not used the pacemaker. My Cardiologist says that when my battery needs to be replaced he will remove the pacemaker and leave the leads in place. I worry about the effects of having the leads in place with no pacemaker. Both times I passed out I was lucky to be where I was helped-the first time while I was swimming, second in hospital. Has anyone had a pacemaker removed for not using it?

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