Pacemaker & ICDs: Introduce Yourself & Meet Others

To get the conversation going in the new group dedicated to Pacemakers and ICDs, I am inviting @cottagecountry, @jc76, @cominer1, @danab, @jer22, @phil75, @ch665296f, @texas14, @hankcat, @exboater, @deniseheart, @eunice18, @marionforsey, @mfenn, @brightwood, @tct and @jillianas527 to get the conversation going on living with a pacemaker or ICD or the experiences of facing the surgery and recovery afterwards. Many of you have met already on Connect in pacemaker discussions.

Some of you are well into your journey while others are either still facing an upcoming pacemaker or ICD surgery, or are in the early stages of your recovery. How is everyone doing and what questions might you have for others?

Hello everyone!
I hope everyone is doing well.
Thank you to Justin and Colleen for making this group possible. Having a dedicated group for pacemakers and ICDs will be a great help to all of us.
I look forward to reading everyone's comments. And maybe adding a few of my own.

Thanks to Justin and Colleen for inviting me to your new group. ICDs in particular, have unique challenges, fears and obstacles for the recipients to overcome. I look forward to seeing this group grow. I had an ICD implanted in 2019.

Yes, thank you, Justin. Late in the pandemic I had no idea that I needed a Pacemaker, or even had heart issues, other than PVCs. I had some brief, occasional lightheadedness ( I attributed it to Covid anxiety) and some shortness of breath walking uphill in my neighborhood. But I was concerned enough about the PVCs that my primary care person (fortunately) took it seriously and ordered me a 30-day monitor. Luckily I was wearing it on New Year’s 2022-23 when it reported me for a 4.5 second “complete electrical blockage”, experienced as a near-faint. On January 3 a cardiologist called me and informed me I needed a pacemaker immediately. I checked into the hospital through the ER, was finally admitted, and waited in my hospital bed for two days, until they had a half- hour slot open up for me. I’m so grateful. The device identified paroxysmal AFib last year, and apparently I had elevated stroke risk, so I’m now on Eliquis. I had a routine Device Check this week and all’s well. I have 8 1/2 to 9 1/2 hrs. left on my battery, and I’m almost 79. I believe my pacemaker saved my life.

Hi! My life with a PM started Aug 9th after passing out a few times which lead to a loop recorder being implanted. It picked up a 15 second “pause” and passing out which necessitated a PM. It has been going well since implantation. The best thing for me was to start walking Day 4!! Slow and steady at first and usually 2-3 miles a day now! (I have known for years that I also have BAV and Aortic Aneurysm that we are monitoring)

I am really glad the Director decided to start a specific group for this. Millions of people now have ICDs, and Pacemakers or both like I have.

I have had a ICD/Pacemaker since 2006. I am on my 3rd ICD/Pacemaker. Mine were implanted at Mayo Jacksonville where I have been a patient theres since 2006. I have gone through a lot with mine over the years. I have had probably a dozen shocks in all these years. Everytime I do my EP team looks at the cause and what to do to prevent the need the ICD/Pacemaker to shock me again.

In addition to my ICD/Pacemaker I am on a lot of medications that my EP and heart failure doctor have me on in addition to another medication my pyschiatric medication specialist has me on. I mentioned the latter medication because taking them was a result of being shocked 5 times in a 24 hour period. This tramautic event brought back my Vietnam service, deadly force as a police officer and I got PTSD with anxiety/panic disorder.

My PTSD anxiety/panic disorder is under control and only slighty affects my life style. I have a lot of years now with a ICD/Pacemaker experience and experience with the surgeries, pace clinic, home monitoring, ICD/Pacemaker under skin verus muscle implantations, things that can affect your ICD/Pacemaker and hopefully lesson anxiety over getting one and living with one. All these come from almost 20 years now being treated at Mayo Jacksonville.

I think one of the most important comments to me about having a ICD/Pacemaker that changed my feelings on having one was: "A ICD/Pacemaker is like having your own EMS in your body waiting to help." It is a great medical device that has saved millions of lives. My pacemaker has also stopped my EF from dropping any further and corrected low pulse rate.

My need for a ICD/Pacemakr came from HF and low EF. It was getting lower and lower and once reached 30 medical advice was to get a ICD. I have cardiomyopathy (virus got into heart) which caused electrical issues. I have a Boston Scientific device.

Great--Glade this happened. and thanks to all who made this happen.
Hope those who need help use this wonderful tool for what ever questions you may have on your journey with a "Pacemaker or those about to get one".
Take care

@brightwood
Is your post correct you have 8-9 hours left on your battery?

I don't want to alarm you but if that is correct you need to contact your cardiologist immediately. ICDs and Pacemakers are usually changed out when batteries get low way beyond letting them get down to the 8-9 hours left. This is because what you get on battery life is an estimate. Pacemaker can use more or less electrical over time and things like wire resistance can affect them.

Not a medical doctor just passing on what I have learned from my Mayo EP team and 20 years personal experience with having a ICD/Pacemaker.

@eunice18
Can you go into what a loop recorder is and it's concept versus a ICD/Pacemaker? I would like to know your experience with a loop recorder and why your cariologist or EP went with that device versus typical ICD/pacemaker?

I have learning now about all these new devices that are not the past pacemaker devices. I have a ICD/pacemaker from Boston Scientific and on my 3rd device.

Omg. It should have said “years”. It was originally about 11 yrs. Thanks for letting me know. iPad doesn’t like my wrinkly fingertips.