replace pacemaker

Hi,  Not sure if I want another pacemaker after my current one runs out.  I should have 6 years of life left on it and that will take me to 70.  I had a complete heartblock do to Sacrodosis which has gotten better yet left me with a lot of scarring.  I would like to see if I can finish my life without one, should I try to let it go in end of life mode and see how I do? Anyone out there made this decision?


End of Life Issues

by Swangirl - 2019-02-20 00:14:42

I'm 77 with probably ten years left on my new pacemaker and I struggle with the same issues as you do.  There is an optimum time to die I think.  A lot of older people in my community do everyhing they can to continue living even with difficult interventions and poor quality of life.  I don't want to be one of them.  I would not want to keep my heart pacing when my body has signaled that it's done or when life is no longer worth the struggle.  

These are not things that many people want to talk about.  I'm not sure what the end of life would be like with a complete heart block when there is no pacemaker to compensate.  My guess is that it would not take long.  It could be frightening, or painful, or a difficult death.  In California we have the choice of a physician assisted death if we meet the criteria.  It's important for me to have the support of family for decisions that I would make in this regard.

I too would like to hear from someone of advanced age who refused another pacemaker and can tell us what that situation is like.  

battery life

by Tracey_E - 2019-02-20 10:56:38

First of all, replacements are a piece of cake so it's nowhere near the ordeal getting the first one was, so don't let that keep you from getting a replacement.

Pacers often offer more quality of life than quantity, which means it's possible you'll  keep on chugging but not feel as well. You can ask them to turn it down and see how you feel to give you an idea what it'll be like without the battery, EOS only lasts about 3 months, during that time it paces at a steady rate, so that is not an indication of how you'll feel without it 

end of life pacer

by DMJ - 2019-02-20 14:31:11

I did read a article that talked about the doctors determine if the cost of a replacement pacer and what you health projects your life span remaining to be, if they would do it.  I quess this will become more common if more of our medical cost are controlled by the government.  Quality of life and the quality of death is something we need to have control over.  I would like to somewhat know what my remaining time would be, without it being a turning off life support kind of thing.  No one wants to live and become a burdon to others.

When my pacemaker reaches EOS

by Gotrhythm - 2019-02-21 15:10:52

I recently updated my Advanced Directives, sometimes called a "Living Will" to include turning off my pacemaker under some conditions. In North Carolina a pacemaker is an artificial device, legally no different from a respirator, and can be legally turned off without any accusation of "assisted suicide."

I'm 76 and probably have 3-4 years left on my current device. I have decided I won't have it replaced when the time comes. In the past couple of years, I've spent a lot of time visiting people in assisted living situations--many were physically pleasant with excellant staff who gave loving care. Nevertheless, nothing that I have seen makes me think I would want to spend the final portion of my life in one. As Swangirl says, it seems there is an optimal time to die.

As for how I will feel without a working pacemaker, drugs exist that provide symptomatic relief, and compassionate paliative medical care can greatly ease suffering.


Sarcoidosis and the pacemaker

by braver - 2019-03-13 19:20:26

Curious, I had a ICD w/pacemaker installed 2 weeks ago. I also have Sarcoidosis of the Lungs and heart. How did you deal with the Sarcoidosis? You said it got better. What meds did you take for this. Awaiting a reply.


by DMJ - 2019-03-13 22:02:50

I was misdiagnosed with a complete heart block, they didn't know what had caused it.  I was first given a single pace pacemaker in 2010.  It took only two years until I was worse than before and  had a replacement with ICD in 2012.  In 2015 I was still feeling bad and had SVT that sent me to Boston, Brighams Womens.  It was there they found out it was Sacoidosis in my heart that had caused my heart block.  I have a great doctor there, Dr. Stewart.  I was started on Prednisone 20 mg every day, I didn't like it at all.  Got down to 5 mg and than stopped.  My Pet scan did show a lot of  scarring and granalomas.  I had a abalation to remove some scarring this helped.  I tried Methatrexate  did not tolerated it.  I stopped treating the sarcoidosis and just did what I could to treat the side effects, I have restrictive cardiomyopathy, congestive heart failure, complete HB, ventricular tachycardia, caused by the cardiac sarcoidosis.  My lung are ok, I have some sarc in my lymph nodes.  I'm 64 and have a ejection fraction of 32.  I'm on tons of meds and do OK.  My sarc has gone into somewhat of a remission in my heart, so that is good.  It is a very mis understood illness and finding a good team is important.  Just try to stop your heart from getting scard.

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