1. < Heart Rhythm Conditions

Pacemaker recipients: Looking for support from others

Posted by balubeje @balubeje, May 25, 2016

I am coming on a year post op having a pacemaker placement for bradycardia. I would be interested in a support group with the same concerns. I think a support network would be so beneficial.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

eunice18 | @eunice18 | Oct 1 12:28pm
In reply to @colleenyoung "What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect..." + (show)
@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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Great idea for pacemaker group!!!!

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1 reply
jc76 | @jc76 | Oct 1 5:46pm

@balubeje
Concur,
Colleen can you set it up.

I had a ICD/Pacemaker inplanted in 2006 at Mayo Jacksonville. I have been through so much with it I could fill pages. My experience and it is both bad and good. It now spans almost 20 years and on my 3rd one. Bottom line, would I have it implanted if had to do all over, YES! I am only alive and writing this because I had it implanted.

I learned so much from Pace Clinic at Mayo, my Electrophysiolgist, cardiologists and my own research. I also go to the manufacturer of my ICD/pacemaker (Boston Scientific) which is also a great place for research and will also answer your questions about your specific product.

Where I used to worry about having it I now smile knowing I have it.

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1 reply
cottagecountry | @cottagecountry | Oct 1 7:18pm
In reply to @eunice18 "Great idea for pacemaker group!!!!" + (show)
@eunice18

Great idea for pacemaker group!!!!

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But first we need a dedicated and separate pacemaker support group category. This thread is incredibly long and involved. A more direct connection would be helpful. Your thoughts?

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2 replies
eunice18 | @eunice18 | Oct 1 7:58pm

Agree!!!!! Any ideas to make that happen?

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eunice18 | @eunice18 | Oct 2 11:02am

I put a request in the Feedback, but don’t know if that will work???

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1 reply
cottagecountry | @cottagecountry | Oct 2 12:29pm
In reply to @eunice18 "I put a request in the Feedback, but don’t know if that will work???" + (show)
@eunice18

I put a request in the Feedback, but don’t know if that will work???

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Eunice18, I have also made such a request. I contacted Colleen to ask if this would be possible. There are many of us out there who have various cardiac issues but also have pacemakers or ICDs or CRTs. Some of the issues we experience with these devices are a topic all unto themselves. I think many people with pacemakers checkout the Mayo site but see nothing specifically for them in support group listing. So they move on. I have been chatting with others I know who have pacemakers and they do not see the point of joining since it appears there is nothing there for them. .
I think we have to build some momentum by sending in requests for the formation of such a support group. The more of us who ask for a support group dedicated to those of us with pacemakers, the more likely it will happen. The moderator(s) need to know that there is interest for a support group. And they will only know if we take the time to ask for one. Let's make it happen!

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1 reply
bill0996 | @bill0996 | Oct 3 8:37am

14 months with Pacemaker. A group to support this segment would be a good addition.

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1 reply
wslt | @wslt | Oct 3 9:55am
In reply to @jc76 "@balubeje Concur, Colleen can you set it up. I had a ICD/Pacemaker inplanted in 2006 at..." + (show)
@jc76

@balubeje
Concur,
Colleen can you set it up.

I had a ICD/Pacemaker inplanted in 2006 at Mayo Jacksonville. I have been through so much with it I could fill pages. My experience and it is both bad and good. It now spans almost 20 years and on my 3rd one. Bottom line, would I have it implanted if had to do all over, YES! I am only alive and writing this because I had it implanted.

I learned so much from Pace Clinic at Mayo, my Electrophysiolgist, cardiologists and my own research. I also go to the manufacturer of my ICD/pacemaker (Boston Scientific) which is also a great place for research and will also answer your questions about your specific product.

Where I used to worry about having it I now smile knowing I have it.

Jump to this post

It would be helpful to share your knowledge.

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