Thank you both! I am a little freaked out at the thought that my heart won’t beat at all without some little device directing it. I don’t know if the experience is different for someone that is “totally blocked” vs. one that kicks in when needed. I don’t understand how they respond to different conditions and what fine tuning is needed.

You have some very valid concerns. I’m totally clueless when it comes to the PM and a totally blocked heart. Then again I am aware of a “friend” who wears a defib vest that “kicks in” when the heart stops and that is beyond me. I have a “team” of folks who worry about that “stuff” for me and I am so grateful that each day when I wake up I’m here and have a purpose and if I wake up in a different location it was time for me to have my room in the mansion so for me all is well and I am in a win-WIN. PS I would be concerned if you weren’t freaked out I have been in that situation during this ride.
Fine tuning for me was getting the pace maker inserted, then the six week check up and 3 month check up to follow my pm and then each quarter do the remote check…the remote check is definitely a fine tuning moment I know when I receive an envelope in the mail all is well and when I don’t and get a phone call something is up. One phone call so far-brought on some tests-but end result no definitive answers. Personally, I think you will find a new normal for you and I am more than happy to put you on my prayer list.

I had surgery last week to replace the lead because I had problems from the day it was installed. I still have extreme burping, some nausea, a pinched feeling by the pacemaker, bad pain in my arm that comes and goes and pain in the heart area. I have an apt with heart doctor on the 5th. I told them last week I was having pain. They said I should contact my primary. What would happen if I told them to just take it out?

Hi there, this is shortshot80) my pacemaker beat steady no matter what I do. Doc told me that it won’t stop even with a low battery. My battery has lasted for 10 years now and I have to have the battery changed end of March or first part of April. No matter what activity you do it keeps on beating. I do understand scared of something new, but if the new helps me Why not do it. Once in your life this might be the one thing that helps you. This kicks in whether you need it or not. Hey….Don’t knock it just get all the info you need to understand it.
Then believe in your choice. Nancy

I have been following this discussion and have had a dual chamber pacemaker for 2 years and I am in mid sixties.
If you have had a full cardiac work up by a very good cardiac clinic and cardiologist who specializes in only heart electrophysiology, and told that you need a pacemaker to be healthy and safe, then it is something to seriously consider. Then get a second opinion by an equally good cardiologist from a different clinic. A good Dr should tell you not only how this will help you but also:
That it can not be reversed without huge risk.; the procedure has significant risks (can puncture your lung) ; the pacemaker can get infected (very possible during a future surgery) and this can cause extremely serious complications.
If someone needs a PM, then it should be an option after necessary diagnostic testing, more than one opinion and all risks are discussed. Then you will not have doubts or be surprised by negative outcomes. I wish you well.

@thankful – @Imclaugh. So well said & thoughful. If I were to find myself in need of a PM, this would be the advise I would take & consider carefully. Thank you!

Got a pacemaker the day after Thanksgiving, had it checked twice . Can’t see where it does a damn thing!!!

Of course, my fatigue, breathlessness are still there, better than ever!!!

Hi Nancy, @shortshot80

What encouraging words! Thank you for sharing your pacemaker story with us.

Teresa

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!!!

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

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.

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

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

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/