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.

Colleen Young, Connect Director | @colleenyoung | Oct 3 5:19pm

Hi @eunice18 @bill0996 @cottagecountry @jc76, I appreciate this feedback regarding a group dedicated to pacemakers and implanted cardiac devices separate from the Heart Rhythm Conditions support group. Your request comes at a good time as we are reviewing plans for future support groups later this year.

This discussion that has been going for years now has formed a great group of members.

To find more pacemaker, ICD, CRT-related discussions, use the Group Search https://connect.mayoclinic.org/group/heart-rhythm-conditions/?search=pacemaker&index=discussions

jc76 | @jc76 | Oct 3 4:42pm

In reply to @cottagecountry "But first we need a dedicated and separate pacemaker support group category. This thread is incredibly..." + (show)

Why not just ICD/Pacemaker Support Group?

jc76 | @jc76 | Oct 3 4:40pm

In reply to @cottagecountry "Hello bill0996 Would you consider sending a private message (PM) to Colleen, our moderator , expressing..." + (show)

@cottagecountry
Although you sent your message to bill0996 I am going to contact Colleen about this. Colleen monitors our posts and I see she did a like to when I mentioned this as a new group.

The number of individuals that have ICDs, Pacemakers, or both a ICD/Pacemaker is in the millions. I know I went through so much with mine (on my 3rd one) that I could fill pages with what happend and what was done to correct it.

I have a Boston Scientific AICD/Pacemaker and on my 3rd one. Some of my wires are NOT MRI compliant but most ICD/Pacemakers and their wires are MRI compliant. Does not mean if yours is not compliant can't have a MRI it is they have to take special precautions.

cottagecountry | @cottagecountry | Oct 3 2:15pm

In reply to @bill0996 "14 months with Pacemaker. A group to support this segment would be a good addition." + (show)

Hello bill0996
Would you consider sending a private message (PM) to Colleen, our moderator , expressing your support for the creation of such a group? I think it might help. The more of us who indicate we are interested in participating in adedicated support group , the more likely we might get one.
Colleen, when I contacted her, said they were looking to see if other groups could be added. I think if enough of us express an interest in the creation of pacemaker support group it might just happen. Please spread the word.

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)

It would be helpful to share your knowledge.

eunice18 | @eunice18 | Oct 3 9:26am

Totally agree!!!

bill0996 | @bill0996 | Oct 3 8:37am

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

eunice18 | @eunice18 | Oct 2 3:51pm

For sure!!!!

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 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!

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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