Pacemaker recipients: Looking for support from others

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?

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.

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.

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.

Post PM seems to be a bit of a different world than before! Great to hear others stories and reflect!! Hang in there!!

Yes, eunice18, it can be. But not necessarily in a bad way.
For me, the biggest takeaway has been gratitude. I have learned to count my blessings of which I have many. I am now very aware that each day is a gift and oh so many others in this world did not get to experience 70 years like I have. And while some days present challenges, I am thankful to be here to "manage" them.

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.