Pacemaker recipients: Looking for support from others

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.

@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.

Why not just ICD/Pacemaker Support Group?

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

Hello jc76
Thank you for your support on this topic.
Since I have a CRT, I would be interested a support group that includes my device.
About 80% of all CIEDs are pacemakers, either single or dual chambers devices. A further 10% are ICDs. The remaining 10% are CRTs. But the implantation of CRTs is increasing.
For someone new to this site, locating the pacemaker thread mentioned by Colleen is pretty difficult. I accidently stumbled across it myself. If we wish to offer support and shared experience to those who already have a device or to those who are perhaps scheduled to get one, accessing that information should be easy to find. A dedicated support group listing would take a lot of guessing and searching out of the mix.
Advice and shared experiences I received from others made my experience much less isolating. Knowing you are not alone is simply invaluable. That is the essence, indeed, the very definition of a support group.

Glad we are now getting support for this new group!!! Can hardly wait for it to happen!!!

I like the idea! I was scheduled to have a pacemaker,defibrillator put in about two weeks ago. I did not have it done because of unanswered questions. No. 1 question was, What is the model number? The Dr. refused to give

To whom do we send an e-mail?

@joehohn
This would bother me to! With the type and model you can look it up on their website. I have a Boston Scientific and my EP gave me what I was getting. I am on my 3rd and each time I get an upgrated model along with the Laitude home monitoring system.

Do you have access to another EP? You can always go to Mayo or Cleveland to have it done and then have a local EP or cardiologist be your local specialist. Probably would need to travel once a year to the institution that put it in. But many people have ICD/Pacemakers and move and then have it monitored locally.

When I first got mine I lived over 3 hours from Mayo. They asked (Mayo) to have a local caridologist who was willing to work with Mayo and provide local cardiologist monitoring and access as well as coming to Mayo Clinic on on going basis.

Mayo also put me on a system called Latitude. It can monitor your ICD/Pacemaker and send reports to your EP and Pace Clinic. How I had it set up was Mayo would get report and send ot my local caridologist as well.

In 2015 move to Ponte Vedra and now 25 minutes away from Mayo so the need for an additional local cardiologist went away. It is too bad your EP or cardiologist is NOT providing the information you requested as that is exactly what they should be doing for you or any patient.

Colleen is the monitor and you can message her directly or direct your comment to her.