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 Heart Rhythm Conditions Support Group.

@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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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

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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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/

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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?

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@janiesimmons

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?

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Hi @janiesimmons,

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

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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.

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@kanaazpereira ,
hello! I would like to know, if other PM recipients (dual chamber PM) take beta blockers. I tried to find hints in the medical journals, so far without any result. I got a PM nearly one year ago. It was twice adapted by the cardiologist, without a positive effect. I get tired after maybe 100 meters (bicycle). .this should not happen.I think my medication with the beta blocker (bisoprolol) might be the cause.
before I will make an appointment, ,it is important for me to know if other people also take this medicine. + a pacemaker.
.bisoprolol reduces the heart rate, in contrast the pacemaker activates, . maybe the beta blocker prevents a quick adaptation, when I start cycling.
yoanne.

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I have bradycardia and pacemaker
I just woke up this sumer after five years
There are triggers that will set it off u should read the afib info on Mayo Clinic lt has lot help I have found that being sure to not agrivate them . My last one about three months ago was my five o’clock glass of wine o was having arythims about one on the morning left me tired during the day and a little short of breath this all stopped when I stopped the alcohol now if I don’t break another trigger I fee really good

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@exboater

I have bradycardia and pacemaker
I just woke up this sumer after five years
There are triggers that will set it off u should read the afib info on Mayo Clinic lt has lot help I have found that being sure to not agrivate them . My last one about three months ago was my five o’clock glass of wine o was having arythims about one on the morning left me tired during the day and a little short of breath this all stopped when I stopped the alcohol now if I don’t break another trigger I fee really good

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exboater,

I am unsure whaat is meant in your post about just woke up.

I'm glad you found one of the things that trigger your Afibs. Those are difficult to deal with. I have Brady and refused a pacemaker due to it being a foreign object in my body. I get my HR up by moving around. I also found that even though I get a drop in my HR at night and it was very bothersome to the point of waking me and causing restless sleep when I changed my BP med to splitting the dose I sleep better and my HR is not so very low at night.

Doc finally agrees I don't really need the pacemaker.

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@boredsilly

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!!!

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I should read Mayo Clinic info on pacemakers they are life changing things
There are triggers that set the afib off u will need to pay attention to them I have had mine for five years and just woke up this summer And payed attention to them.my shortness of breath is gone and I feel like my old self
I can be having arythems while asleep and not know it

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@exboater

I should read Mayo Clinic info on pacemakers they are life changing things
There are triggers that set the afib off u will need to pay attention to them I have had mine for five years and just woke up this summer And payed attention to them.my shortness of breath is gone and I feel like my old self
I can be having arythems while asleep and not know it

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It is good you learned about your triggers. I don't have Afibs, just PVCs which Mayo Clinic has finally recognized as very dangerous.

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