Pacemaker recipients: Looking for support from others

Hello irishpeaks
My apologies in being so slow to reply. This past weekend was the Canadian Thanksgiving weekend and, well, between my side of the family and my in-laws, I think I may have had enough roast turkey to last me until at least Christmas. Perhaps even beyond.

I, too, have a CRT-D. I received mine in September 2022. CRTs are used primarily for the treatment of heart failure. Mine (and yours) just happened t come with a defibrillator. joyh got to skip that fun part. CRTs are still reasonably uncommon although those with defibrillators are more common than those without.

Any cardiac device that has 3 leads is a CRT. Like me, you have one lead implanted in your right atria, one in your right ventricle and one in the left ventricle. In the old days" they used to "hook" (think "gaff" hook) the leads into the walls of the heart. But using that method frequently resulted in one or more of the leads becoming loose or dislodged. Now, they "screw" them in. That change in attachment technique has resulted in far fewer episodes of leads becoming loose or detached.

CRTs have been a game changer in the treatment of heat failure. For many of us, the device has not only increased our ejection fraction but also reduced the size of the left ventricle. I completely agree with you about being thankful for this technology.
I was very fortunate when I was referred to the electrophysiologist who did my implant. At the time of my first consultation with him, he handed me a card with a number of websites addresses printed on it. He told me to go and learn as much as I can about the device I was getting and when I come back to see him next, he would answer all my questions. He did exactly that.

But he also set me on a journey to learn as much as possible about both the device and also my diagnosis. For me, I found the more I learned, the more at ease I became with the device. And although I am by no means an expert on them, I have learned a great deal about them. And how they work. This device, quite literally, saved my life.

Your reply made me go look out of curiosity, and I am the recipient of a CRT-D. Don’t know much about it other than it’s been very reliable and packs a heck of a punch when needed! Certainly thankful for the technology.

Is the CRT a new type pacemaker? I am on my 3rd ICD/Pacemaker from Boston Scientific and have not heard of CRT-P.

My device has wires in both atrials and the LV. I am paced continuously to keep my pulse to 70 bpm. If I go into VTAC my device will first speed my pacing up to bring me out of it. If not successful a shock and if that is not successful a higher shock.

As you can see by me posting this it has worked every time!

I, too would be thankful for a specific group for Pacemakers. I now have my second pacemaker (CRT-P) and feel the group would be helpful to ease into any questions that come along.
Thanks

Hello joyh

You are a rare individual. Only about 10% of implanted cardiac devices are CRTs. And of that 10%, less than half are CRT-Ps! You are (almost) an unicorn! 🦄 Talk about being pretty unique.
How long have you had one? How are you doing with yours?

Hello joyh

You are a rare individual. Only about 10% of implanted cardiac devices are CRTs. And of that 10%, less than half are CRT-Ps! You are (almost) an unicorn! 🦄 Talk about being pretty unique.
How long have you had one? How are you doing with yours?

I, too would be thankful for a specific group for Pacemakers. I now have my second pacemaker (CRT-P) and feel the group would be helpful to ease into any questions that come along.
Thanks

Solid idea…I think it would be very helpful for those folks that are hesitant in going down that avenue.

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.