1. < Heart Rhythm Conditions

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 9, 2017
In reply to @kanaazpereira "Hello @bergem, I moved your message to this discussion group where you can meet others who..." + (show)
@kanaazpereira

Hello @bergem,

I moved your message to this discussion group where you can meet others who have shared their experiences with pacemakers. I encourage you to read through the past messages of this discussion thread, and I'm also tagging @canammick @jimana @balubeje @regeanna @lakelifelady as they may be able to offer more insight.

@bergem, have you talked with your cardiologist about other probable causes for the dyspnea, such as congestive heart failure?

Jump to this post

Hello @bergem

We wish you well as you go to Mayo Clinic this month. We would love for you to update us after your appointment.

Teresa

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 6, 2017
In reply to @kanaazpereira "Hello @bergem, I moved your message to this discussion group where you can meet others who..." + (show)
@kanaazpereira

Hello @bergem,

I moved your message to this discussion group where you can meet others who have shared their experiences with pacemakers. I encourage you to read through the past messages of this discussion thread, and I'm also tagging @canammick @jimana @balubeje @regeanna @lakelifelady as they may be able to offer more insight.

@bergem, have you talked with your cardiologist about other probable causes for the dyspnea, such as congestive heart failure?

Jump to this post

Hi @bergem
I'm so glad to learn that you are coming to Mayo Clinic...you are in good hands!
Please keep us updated, and let us know how your evaluation goes.

REPLY
eileena | @eileena | Sep 6, 2017
In reply to @kanaazpereira "Hello @bergem, I moved your message to this discussion group where you can meet others who..." + (show)
@kanaazpereira

Hello @bergem,

I moved your message to this discussion group where you can meet others who have shared their experiences with pacemakers. I encourage you to read through the past messages of this discussion thread, and I'm also tagging @canammick @jimana @balubeje @regeanna @lakelifelady as they may be able to offer more insight.

@bergem, have you talked with your cardiologist about other probable causes for the dyspnea, such as congestive heart failure?

Jump to this post

Sometimes you need to read up on things outside of the medical offices. However, if the pacemaker is what you needed it is good your doc went that direction.

REPLY
shortshot80 | @shortshot80 | Sep 6, 2017
In reply to @kanaazpereira "Hello @bergem, I moved your message to this discussion group where you can meet others who..." + (show)
@kanaazpereira

Hello @bergem,

I moved your message to this discussion group where you can meet others who have shared their experiences with pacemakers. I encourage you to read through the past messages of this discussion thread, and I'm also tagging @canammick @jimana @balubeje @regeanna @lakelifelady as they may be able to offer more insight.

@bergem, have you talked with your cardiologist about other probable causes for the dyspnea, such as congestive heart failure?

Jump to this post

Shortshot80)Nancy.... I have a pacemaker that I received in 2007. I was in the hospital for a change of medication. Doc tried to change meds for four days and nothing was working. My BP kept dropping into the 30's so a pacemaker was implanted and I feel fine. Due for a change soon. Not sure when that will happen, But I'm glad I have it. I try to to what my doc wants without too much talking. If he want it, it must be needed. Nancy

REPLY
Berge Markarian | @bergem | Sep 6, 2017
In reply to @kanaazpereira "Hello @bergem, I moved your message to this discussion group where you can meet others who..." + (show)
@kanaazpereira

Hello @bergem,

I moved your message to this discussion group where you can meet others who have shared their experiences with pacemakers. I encourage you to read through the past messages of this discussion thread, and I'm also tagging @canammick @jimana @balubeje @regeanna @lakelifelady as they may be able to offer more insight.

@bergem, have you talked with your cardiologist about other probable causes for the dyspnea, such as congestive heart failure?

Jump to this post

Yes, I did and I have no signs of heart failure, but I am going to Mayo Clinic on Sep 14 in Rochester, MN for evaluation, My doctor recommended this and I have great reports from people who have received excellent care at Mayo
Hope for the best
Thanks
bergem

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 5, 2017

Hello @bergem,

I moved your message to this discussion group where you can meet others who have shared their experiences with pacemakers. I encourage you to read through the past messages of this discussion thread, and I'm also tagging @canammick @jimana @balubeje @regeanna @lakelifelady as they may be able to offer more insight.

@bergem, have you talked with your cardiologist about other probable causes for the dyspnea, such as congestive heart failure?

REPLY
11 replies
Berge Markarian | @bergem | Sep 5, 2017

I had a Dual chamber Pacemaker, but due to persistent dyspnea(shortness of breath ) it was upgraded to Bi ventricular Pacemaker , but I still have dyspnea and several checks and changes of my Pacemaker did not help my symptoms. I wonder if anyone had a similar experience or any advice
Thank you
bergem

REPLY
shortshot80 | @shortshot80 | Jul 22, 2017
In reply to @lakelifelady "During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic..." + (show)
@lakelifelady

During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

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shortshot80.....Nancy..... My pacemaker is aprox one inch wide and same long. the wires from it I can't hardly feel. Also it is the left side of my chest above my breast. It isn't noticeable and I can wear anything I want. "As a elderly lady I don't often go to a "King's Ball" so it doesn't make any difference what I wear. Now I suppose that if I wore a bikini no one would notice. Yes I see it but who cares?

REPLY
regeanna | @regeanna | Jul 21, 2017
In reply to @lakelifelady "During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic..." + (show)
@lakelifelady

During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

Jump to this post

Hello,
I just wanted to reassure you that in terms of bulging , I hardly even feel my pacemaker and no body has ever even caught on that I had a pacemaker. I had bradycardia as well as complete heart block with a rate of 42 bmp, I'm so glad my cardiologist had me get an implanted loop recorder which after a years time captured the problems I was having. I know it was by divine direction that I have this pacemaker, and grateful to have it because it means I can keep living to serve God another day.

REPLY
eileena | @eileena | Jul 21, 2017
In reply to @lakelifelady "During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic..." + (show)
@lakelifelady

During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

Jump to this post

@shortshot80

I'm 67. I do not want a pacemaker yet. It is a future thing, but the doc knows eventually it will be done. I had a quad bypass on 7-24-15, almost 2 years ago. i go to Scripps Clinic and he is one of the youngest ones there, some liken him (at the last heart failure group meeting) to Dougie Houser as he is so very young. He is gifted beyond his years.

Last year I began taking a supplement used world wide for heart failure, but not prescribed by our own AMA docs. it is Hawthorne Solid Extract, a viscous liquid, not a solid like a bar of chocolate. My cardiologist is aware I take hawthorne. After I began taking that supplement my left Atrial went from severely dilated to moderately dilated. So...as you see, it is not yet time for a pacemaker.

I climb stairs, today I managed 10 flights, these are at work, I could take the elevator, but find it is not reliable. I only climb them so I can get to my shop, so I can go get some hazmat needed to do jtasks and th chemical is kept on another floor. Some days I manage 11,000 steps according to my step counter. And last year did the 4.1 mile Heart walk her in San Diego, but this year I will do the shorter one.

His and my concern is that my heart rate drops to 36 after I manage to go to sleep. But...I have bradycardia, with a resting rate of around 45 BPM, so dropping 9 BPM when I go off to sleep is not as bad as what you might be thinking. One of the things that drags my heart rate down like that is Coreg. It is known for slowing the rate in that manner, but without it I suffer bad migraines with aura, so caught between rock & hard place.

I am wondering about the actual size of a pacemaker and don't want a large bulge on my chest as it makes me think it will look like I have a third boob. Please don't laugh at me, but just think about a bulge on the chest above my actual boob there. I guess I am a bit vain? LOL!

Thanks for your concern.

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