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balubeje
@balubeje

Posts: 40
Joined: May 25, 2016

Pacemaker recipients.

Posted by @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.

Liked by Solo Act

REPLY

@markjones

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.

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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

@markjones

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.

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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.

@markjones

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.

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@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!!!

@boredsilly

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

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

@markjones

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.

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Hi Nancy, @shortshot80

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

Teresa

@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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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!!!

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

@markjones

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.

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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.

Liked by grandmaR

@markjones

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.

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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

@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

@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/

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?

@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?

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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