Pacemaker recipients: Looking for support from others

Posted by balubeje @balubeje, May 25, 2016

I am coming on a year post op having a pacemaker placement for bradycardia. I would be interested in a support group with the same concerns. I think a support network would be so beneficial.

Interested in more discussions like this? Go to the Pacemaker & ICDs Support Group.

lacudia | @lacudia | Oct 13, 2018

I have a 100 percent dependent pacemaker and have had a AV node ablation. The Ablation was completed 9/2718. I am feeling well. Had been allergic to all afib meds due to a blood disorder. Some problems having to go slowly reducing the predisone I was on, but am dealing with this well.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 23, 2018

In reply to @janiesimmons "I just had my pacemaker implanted last month (6/21). The pacemaker has been a slight irritation..." + (show)

Hi @janiesimmons,

I was wondering how you're doing after the procedure; did the ablation work in controlling the irregular heartbeat?

jbs41 | @janiesimmons | Jul 21, 2018

I just had my pacemaker implanted last month (6/21). The pacemaker has been a slight irritation but no real problem to-date. Monday (7/23) I will have a NV Node Ablation procedure done to control my irregular heart beat (it could not be corrected with medication or cardioversion).. Has anyone had this Ablation procedure and what were your results, experiences following same?

Colleen Young, Connect Director | @colleenyoung | Jul 9, 2018

In reply to @colleenyoung "What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect..." + (show)

Welcome back, @martishka
There is most definitely an active group on Connect discussing heart rhythm conditions. In fact, there is now an entire group dedicated to the topic here:
- Heart Rhythm Conditions https://connect.mayoclinic.org/group/heart-rhythm-conditions/

This particular discussion "Pacemaker recipients" was started in 2016, but continues to be active today. If you skip to the last page of messages, you'll see posts from this year.

I hope you'll direct your friend to the Heart Rhythm Conditions group. This is a good discussion to start with:
- Heart Rhythm Conditions – Welcome to the group https://connect.mayoclinic.org/discussion/heart-rhythm-conditions-welcome-to-the-group/

martishka | @martishka | Jul 9, 2018

In reply to @colleenyoung "What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect..." + (show)

Hello Colleen, I used to contribute on the heart rhythm discussions, particularly about ablations. I had 4 failed ablate thatons and a successful PVA about 5 years ago. I am actually inquiring about a group for a friend of mine. He has recently (6 weeks ago) had a pacemaker inserted for an AV block. I thought that these discussion groups would be good for him but I see that most of the posts are 2,3 or 4 years old. Is there an active group now that discusses pacemaker concerns for AV blockage? Thanks, Martishka

grandmaR | @grandmar | Feb 15, 2018

In reply to @markjones "Thank you both! I am a little freaked out at the thought that my heart won't..." + (show)

Hello!
So sorry you have had so many issues with your pacemaker. If your pacemaker is dropping your heart rate so low, and you are not happy with the results, why not have it removed??

Good luck!
Ronnie

Ryman | @ryman | Feb 14, 2018

In reply to @markjones "Thank you both! I am a little freaked out at the thought that my heart won't..." + (show)

I wish I had had your advice before I got my pacemaker. My heart rate dropped to 20. I was told I needed a pacemaker. Not much was explained to me. I am hard of hearing so pretty much rely on my family to inform me. Had I known what I know now I either would not have had it done or gone to a large hospital. My second surgery was done in Buffalo, N Y by a surgeon who specializes in pacemakers. But even with that I am not happy with the outcome.

grandmaR | @grandmar | Feb 14, 2018

In reply to @colleenyoung "What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect..." + (show)

Hello!
I am so sorry you have been going through so much. I pray that the doctors will find an answer for you.
ronnie

boredsilly | @boredsilly | Feb 14, 2018

In reply to @colleenyoung "What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect..." + (show)

Had a pacemaker installed the day after Thanksgiving-Checked 2 times. Seems to be OK but I still am fatigued, tired, huff & puff after 2 steps! So far, the pacemaker has done NO GOOD!!! I've run the gammit from cardio inversion, medication, Etc. Step in pulmonogolist:Got a slew of inhalers , cpap, nebulizer, breathing exercises, nasal inhalers, Etc. So far all have failed-still waiting for a cure since 4/2/16!!!

Teresa, Volunteer Mentor | @hopeful33250 | Jan 25, 2018

In reply to @markjones "Thank you both! I am a little freaked out at the thought that my heart won't..." + (show)