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.

Liked by Solo Act

@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
@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…..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

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

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
@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
@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
@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
@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
@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
@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,

How are you? I hope everything went well at your appointment? Please keep us updated, and let us know if you have any questions or concerns we can help with.

REPLY
@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

I had workup with Xray, blood tests, EKG,, Pacemaker interrogation and evaluation at Mayo.I was told my continuing A Fib or Atrial flutter causing my dyspnea, can not be treated with the Pacemaker and any further adjustments is not necessary. But I had a cardiac cath which revealed no occlusions and next Monday I will have a TEE and will stay 3 days in the Hospital to evaluate my candidacy for Tikosyn treatment, even though I had tried it in 2001 without benefit They did not encourage to perform Ablation due to higher risks and small chance of success
Thank you for your inquiry
bergem

REPLY
@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

@bergem, What is a TEE? It is something I do not know about (yet).

Eileen

Liked by Berge Markarian

REPLY
@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

This is Sharon, I has the halter test 24 hours. I was told I have Afib. I was wondering the cause and treatment. Thank you

REPLY
@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 @carnes, welcome. Afib can be simply an indication of stress. The most helpful thing, aside from medications, can be to ensure you are exercising regularly, and resting sufficiently. The daily worries most of us are faced will increase Afib incidents as due to things like watching scary movies which are meant to cause your heart to race and riding those roller coasters that are included in the thrill rides section of amusement parks. Aging can be a contributor as well, but not always.

Mayo clinic has information you can research to learn causes. Your follow up with your doctor will probably give you more insight and he/she will likely provide you with some literature to take home that will provide you with more answers.

Please keep us informed about your progress.

Eileen

REPLY
@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

Thank u so much for you time, your reply. I am 71 years old and don’t do scary movies or thrill rides. My dr. is extremely laid back. No info from him. I don’t get enough sleep, for 2 years I’ve not slept in bed due to heaviness in chest when I’m reclining position. I get about 3 hours a night sleep and know how harmful sleep mess csn be so I don’t take them. Appreciate you research for me, thank u again.Sharon

REPLY
Please login or register to post a reply.