Refusing a battery change

Before I had my PM implanted, they did a test to see if I needed one permenantly. I remember this test very, very clearly. It was a very unpleasant experience because I didn't know what was happening. They turned my external pacer off to see if I could produce my own beats and I didn't. So the next day they strapped me down to a table and proceded to cut into me.
I didn't want it, but didn't know how to explain that to the dr's. I didn't sign a DNR prior to my 2nd valve replacement, though I wanted too. There were too many people in the room when I filled out my living will and such to ask them the about a DNR.
So while I'm strapped to the table and unable to move, the only thing I could do was scream and cry. The pain meds don't work for me! I felt every bit of the procedure despite having enough pain meds to kill a herion addict, so my dr said.
So I have about roughly 3 years left of battery life, and I would rather let the battery be used completely and black out the same way as I did when they turned off the external PM than to be strapped to the table again and be carved on. How can I get the doctor to understand how I feel and to honor my decision?

6 Comments

borrowed time

by Rowan - 2011-06-29 05:06:26

Smitty
I'm sorry you take it as a suicide attempt, but it is not! I do not want to have to be strapped to a table to be carved on while I have NO choice but to endure the PAIN of being cut into. They have already said that they WILL NOT put me under for the procedure. Would you want to do that?
Yes, I signed the form or I wouldn't be here now, but I honestly don't remember doing it. I also DID NOT know that pain meds will not work for me, I do now.
Also, you are correct that I don't know what may happen between now and then. But I do know that I am on borrowed time as is...my scarring on my valve is already requireing that I have it replaced, but have been adviced that I would not have much left to work with if they had to redo it again, to do what I can with what energy I have left when I have it. That the next surgery will more than likely be my last, even if I make it out of it for the 3rd time.

Refusing a battery change.

by Fluzy Suzy - 2011-06-29 05:06:27

I am so sorry Rowan to hear of your hurt and humiliation you have undoubtedly sufferfed. What type of hospital was it, one from the medieval days I wonder!!
You have a right to seek a second opinion and even a 3rd and go to another hospital if need be.
Did you make an official complaint, that would be the first thing to have been done. We here in England are treated differently in all respects, although the information to patients sometimes seems to be lacking in certain areas unless we specifically ask.
I have had 3 pm's and last one been in situ 7 years and have been told it is working 50-50, maybe that is telling me something.
Take care and please seek another opinion and advice.
Take care xxxx
Fluzy Suzy

why won't they put you under if they know pain meds don't work?

by kathykat11 - 2011-06-29 08:06:20

Have tyou asked the reason for them refusing general anethesia, I have had surgery with no meds before and nearly didn't have my 2nd cardiac cath because the first one was so incredibly painful, if i hadn't had a 2 yearold and an 6 weeks old i would have just told them to let me go... I had my cath and it was a breeze and I was happy that I took the chance. Ask some educated questions. Ask if you can have the pacer put under the muscle, they prefer to do that under general anesthesia because it is easier to move the muscles when they are relaxed. # years is a long time to research to find better options than just not going ahead with replacing the battery.
Good luck,
Kathy

Don't Want A New PM

by SMITTY - 2011-06-29 11:06:16

Rowan,

Let's see according to your BIO you were born in 1979 which should make you about 32 now. Why anyone your age would be ranting about a Dr trying to keep them from committing suicide is beyond me. But that is exactly the way your message sounds. And you had the gall to post it on a web site where there are more than 13K members that have a pacemaker by choice to stay alive.

But be all that as it may, you have a PM with 3 years left on the battery an already you are anticipating a struggle with others to not have it replaced. Did you ever stop and think that in three years you could wiped out by an 18-wheeler or poisoned by bad moonshine, or killed by anyone of a thousand other things.

According to what you write you are here today because you have a PM against your wishes. Yet you signed the consent form for the Dr to perform that surgery. The same consent form you will have to sign before a replacement can be implanted. You seem to have lost sight of the fact that the consent form is not for your protection but for the protection of the Dr and hospital. By giving your permission for the surgery, if you then, because of your antics cause the Dr to make a mistake you can't sue. The same rule applies if the Dr makes a mistake without your help. You can't sue, except in cases of gross negligence by the Dr or hospital. So no Dr in his right mind will ever do surgery without the patient's signature on that form.

My suggestion is to cool it and enjoy life at least until the PM battery starts to play out. Which, by the way, you will certainly know about before the battery become too weak to make your heart beat anymore.

I see you have a Medtronic PM and the Medtronic brand (as do some of the other brands) goes into what is called the VVI mode and will last at least three months in this mode. In VVI mode the PM goes into limited operation to conserve battery power. For me the VVI mode was very uncomfortable. It will keep you alive but in VVI you will have at least three months of discomfort (which will probably mean shortness of breath, fatigue and maybe chest pain) to contemplate your future. Then if you don't like your prospects just refuse to sign the consent forms. You don't even have to consider the grief and consternation you will be causing your family and friends.

Smitty

Easy

by ElectricFrank - 2011-06-30 02:06:19

As far as being strapped down and in severe pain during a pacemaker change, I can assure you it is no problem. I had both my original implant and a replacement done in 2010 both with only a local pain shot (like at the dentist) and no sedatives. The whole thing was very easy and virtually no pain.

If you are really serious about not having it changed, all you need to do is don't call 911 when it starts gong south. The problem is that most folks aren't really that serious about it. Nursing homes are full of people who were going to just stay home and die, but at the first sign of a skipped beat were on the phone.

Finally, I agree with you that there is a difference between making an end of life choice and suicide.

frank

Rowan

by sugar - 2011-07-01 02:07:09

#1 - get a new dr. that will hear you and maybe choose a different medication before your next procedure. I have thought of not having mine replaced and then I changed my mind - I am much older than you. You won't die a fast death and there would be time for a family member to declare you incompetent and the judge will make the decision for you. There have been a few judges in my family - one had to make the decision about a newborn baby and the parents relegion said no surgery - the judge made the decision and the child is alive today and the parents are happy they didn't have to make the decision so when a judge makes the decision for you, I hope you are happy with his/her choice to put a pm in again. The main question that is asked "will this procedure" save his/her life by 100% and when the dr. says yes, 100%, it is a done deal.
Good luck mulling this over for the next couple of years. There will always be highs and lows.
Patty

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