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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Great question, Marke92. Do you have "internal feelings" with your pacemaker? How does it make you feel?

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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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I also would like to hear what other people have to say about internal feelings. How they feel with having a pacemaker. How if at all the meds effect them. Whats normal or expected and whats not.

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Hi All,
Today a new member joined Connect's Spanish group wishing to connect with someone who also has an implanted defibrillator. Is there anyone in this group who may be able to talk with Conrado en Español about their experience with a defibrillator or pacemaker? Please click this link.

Desfibrilador Marcapasos implantable http://mayocl.in/2dnTxgF

Gracias,
Gabby

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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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Thank you I will try that! 

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One interesting sidebar on pacemakers is that you are not supposed to use a gasoline chain saw. I use one hours at a time with no ill effects.

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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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You might try going to Metronics which had most of the pacemaker market. This is a huge business for them and they have done a lot of research on pacemakers.

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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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Good Afternoon! I have a pacemaker question for you recipients. Have any of you ever experienced a problem "rejecting" your unit? My husband received his first pacemaker June 2015 and did ok with it til November 2015. Then developed an infection. They removed it December 2015, did 5 days IV antibiotics while he was in ICU and put a new one in on the other side. The incision healed for about 2 weeks, and then re-opened and has never healed since. No blood work nor cultures show infection at any time since, and they have tested repeatedly. He has consistently been on antibiotics since last November when this all started. We finally got his electrophysiologist to believe/admit he agrees his body is rejecting the unit. We have had allergy testing done and all it ruled out is that he is NOT allergic to the titanium or nickel but they don't have testing capabilities to test for the other components so now his doctor just wants to take the pacemaker out and him go back to doing without one. We don't like that option either as he feels so much better with it. Help!!!!

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@colleenyoung

That's a great place to start @balubeje. To tag a particular member, simple add their @username (including the @ symbol) in your message. Like I tagged you in this message.
@balubeje what internal sensations from your pacemaker unsettle you?

@ronbee @jimana @martishka @billmichalski How do you know when something is wrong with your pacemaker? What signs have you been told to watch for?

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I cannot feel my pulse either on my wrists or carotid artery. I do not worry about it.

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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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I had a pacemaker installed two years ago following open-heart surgery for an atrial valve replacement and one bypass. My cardiologist checks it even six months to ensure it is working well and that there have been no heart problems. During my last visit I had him adjust the pacemaker to accelerate the function which increases heart rate with exercise. I felt it was not responding quickly enough when I was on the treadmill. I have had three bad fainting spells. My cardiologist say it was not heart related and he is "stumped" re. the reason. I work to keep myself adequately hydrated.

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@colleenyoung

Hi @balubeje @jimana @bibi12 @billmichalski. Just checking in. How are you all doing?

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Much better. It has really helped to read about how well other people are doing and how active they have become

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