Replace or not

  • by DMJ
  • 2020-04-25 14:02:01
  • ICDs
  • 304 views
  • 4 comments

If you can see you have had not reason for a ICD in 4 years, no shocks and it is time to replace it would you downgrade to just a biventricular PM without the ICD?  I will be almost 70 with CHF and EF of 15% right now.  I don't want to deal with it if I'm dying.


4 Comments

ICD replacement

by Selwyn - 2020-04-25 16:45:34

I expect you have to evaluate what life offers. Sometimes it offers what you put into it.

I talked with a 90 year old last week who was happy in self isolation at home, sitting and playing bridge with his friends using  conferencing software on his computer.  Although self isolating due to the corona virus, he is getting out ( on his electric bicycle) and getting some fresh air. 

Of late I have seen quite a few people in electric wheel chairs zooming up and down our coastal path, and yesterday whilst riding my pedal bicycle, I saw a man in a  hand propelled wheel chair going at least as fast as me ! Lovely to be next to the sea.

I appreciate not everyone wants to be jolted back to life. In general, if you are getting some enjoyment why not continue?  Having talked to many dying folk, there is a time when the body is so poorly the quality of life is also so poor. Depression itself can make the glass seem half empty. This is treatable.  My own Mother towards her latter years became depressed, she was negative about everything and could not be bothered. Once she was on antidepressant medication she was positive- had a new patio, was out and about, and finally kealed over, after enjoying a friends birthday tea at the golf club, with a massive stroke ( so much for atrial fibrillation and anticoagulation!).

The diffeence in surgery between a PM and an ICD is neither here nor there. Whether you have a PM or ICD once your time is up, neither will keep you alive. Quality of life is what is important. In Finkle's book, Man's Search for Meaning, what keeps people alive is the will to live.

(https://en.wikipedia.org/wiki/Man%27s_Search_for_Meaning).

 

Prolonged Dying

by Swangirl - 2020-04-25 16:52:00

I think there's an optimum time to go out and it can be a difficult decision.  I am planning not to have another PM but it's ten years away so don't have to deal with that now.  For me it's not just the quality of my life but what I would put my family through by a long morbidity.  I would like to be remembered as vigorous and engaging and not wear people out with a long unnecessary disability.  

Replace or not

by LORIAAA - 2020-04-26 13:43:43

I think it also depends on where you live / the cardiologist and hospital.  
I had my last appointment with my cardiologist by phone.  He told me for him it is business as usual.  He still does necessary operations - pacemakers, replacements etc.  Appointments are by phone, but not if there is a problem.  I had a list of questions for him.  I felt more relaxed after talking to him.  I would not have any problem having it done.  

You have more choices than you might think

by Gotrhythm - 2020-04-27 16:56:02

Given that we are all going to die, and in the great scheme of things, sooner rather than later, it seems irrational to me to deal with our mortality by refusing to think abour it.

If I understand you correctly, you're not saying no to the pacemaker. You just don't have any experience that tells you the defibrillator has extended your life. In your mind, the positives are unproved, and the negatives, a fairly good bet.

I sympathize with the fear of being shocked, repeatedly, when your heart is really no longer able to do the work of beating--even with the help of a pacemaker-- and you feel so unwell you have essentially no quality of life. I think very few people would think being shocked was desirable when there was no hope of meaningful recovery.

Fortunately, Hospice understands and agrees. When the day is imminent, hopefully far, far in the future, the folks at Hospice can turn the defibilator part off, leaving your pacemaker to function as normal. That will allow you to feel as good as you can, without worrying about being shocked.

Turning the defibillator off is easy, and non-invasive, and not painful.

How do you get to Hospice? The guidelines are different in different places, but basically when doctor believes your condition is terminal, she can refer you to Hospice. They will take it from there. Discuss your concerns about the defibrillator firing with them. They can help you.

But should you replace the ICD? I don't know. Just because you haven't needed it yet, doesn't mean you will never need it. Or that its help would never be desired. 

I would think the knowledge that you can have it turned off, would help. You can have the defrillator now, and also, when you think it's really time to let go, you can stop it.

 

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