Pacemaker recipients: Looking for support from others

I agree that having a pacemaker group is a good idea, and I would continue to check in on this group for what it has taught me about the “cross-over” topics. I used to worry about my heart every night when I lay down and it immediately started doing tap dances in my chest, No longer. PVCs are also less frequent/noticeable now. So rhythms have been my concern for several years. 🙂

Hello brightwood
I understand your view on this but, in all honesty, it is not an either/or thing. I think you will find, quite naturally, a lot of overlap between the 2 groups. It is just that the focus might be a bit tighter on pacemaker-related issues.
I follow a couple of other groups on this page and, inevitable, there is a little "cross-pollination" going on. And that is great.
But, if someone is looking for answers and/or support with regards to either currently having or, perhaps, will be having a pacemaker in the future, having a separate group would make obtaining answers/support that much easier.
As it is now, one has to do a fair amount of "sleuthing" to discover the correct threads to find answers, let alone who to ask. (This current thread started in 2016. A lot of things have changed since then.)
As an example, I was going to start a query about anxiety. Anxiety is not unique to any one condition or group. And I realize there is a Depression/Anxiety support group . But, for me, I have become far more anxious after I received this device (I have a CRT-D) than I ever was before. Before the implant, I was someone who thought more along the lines of Alfred E. Neuman of Mad Magazine fame, whose motto was "What, me worry?" Nah.
Now, worry/anxiety have become a strange fact of my life. Why? Do other pacemaker recipients experience increased anxiety? Do they think it has something to do with the device - in that they are now more or less(as individuals, the necessity for one varies and so does the level of dependence on the unit) reliant on a mechanical device to keep going? Do we fear it will fail us? If one has a defibrillator, do we worry about it "firing"? What coping mechanisms do they use to deal with? Do I do something to deal with my anxiety that could be of assistance to others with CEIDs?
I have read a number of articles about those who receive organ transplants and how their personalities frequently change after receiving one. I am, in no way, equating having a cardiac device implanted with the enormity of an organ transplant and the ramifications that come with that, but still I wonder.
There are so many issues that arise from having a pacemaker implanted that are quite peculiar to the device themselves. Replacing leads, replacing generators, "upgrading" from single or dual chambered devices to 3 chamber devices, to even developing heart failure that can be attributed to having a pacemaker. It is not common but it is not unheard of. What can I do (or nor do) with one? Is travel safe? Can I use a chainsaw? What about electromagnetic fields? Can I exercise? Can I swim? Can compete in bike races? Can I golf? How about play baseball? I am safe around a microwave? Or a welder? The list of queries is almost endless. (I have a friend who has a pacemaker for over 35 years and he has now developed heart failure. I am trying to convince him to join this new group. There is not much he does know about pacemakers and living with one. He is also very upbeat and tremendously supportive.)
Like you, I have had many issues with medications, have both sustained and non-sustained SVTs, atrial and ventricular tachycardia. I have received numerous cardioversions (not from my device, thank goodness), electrical problems (LBBB) and have stage 4, class D heart failure, as well as Dilated cardiomyopathy. And like many who get a cardiac device implanted, I thought that would take of things. But that has turned out not to be necessarily true.
So, in closing, I think there is room for a dedicated group for both would-be and current pacemaker recipients. One that maybe be able to provide some reassurance and shared experience to fellow members, as well as others.
Kind Regards.

Like the idea also, I am going to be getting pacemaker in the future, and nice to know what to expect etc.
Thanks

Dear All, I came here in early 2023, shortly after I had an unexpected pacemaker implanted (for a 4.5 second complete electrical blockage), after a history of a low resting heartbeat and increasingly frequent PVCs. I’m so grateful for my pacemaker, and also for this Heart Rhythms group, where I’ve learned about the connections between my SILENT reflux and my Paroxyzmal A-fib and hiatal hernia, and what side to sleep on, as well as the Pill in-the-pocket concept, ablation, cardio version, Gatekeepers, and Eliquis issues, which led me to the clinical discovery that I also have a PFO. So although I came here specifically searching for a reputable online support group for us Pacemaker People, I am very grateful for what this more inclusive group is teaching me. Just my 2 cents’ worth.

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

@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.

To whom do we send an e-mail?

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

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

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.