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.

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

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The electrophysiologist says my pacer is firing the atrium 97% of the time and the ventricle 56% of the time. No A-fib recorded since the pacemaker was implanted almost two months ago. Since the anti-arrhythmic and the pacer are working well together, he does not recommend an ablation. So praise God, I am doing well at this time, thank you.

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@martishka

I see I have been tagged in these discussions. However, I don;t have a pacemaker, which was offered to me but I chose to go the ablation route for my A fib and svt (tachycardia) I do have a friend who had one put in when she was 30- she kept fainting. She's a black belt in karate- extremely fit and feels awesome. She is now 63 and has had 2 or 3 more put in over the years and no complaints. Hope that helps. Martishka

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I also had a pacemaker placed in my 30s for fainting due to low blood pressure and low pulse. I have had difficulty finding others like myself. Would your friend be interested in discussing her situation? I have adjusted well to the pacemaker but still have occasional lightheadedness but no fainting. I am intersted in whether her symptoms have resolved. I, too, am very active but my doctors did not allow me to continue doing martial arts, as they are concerned about damage to the pacemaker leads. I would like to ask her how she has been able to contiue doing martial arts and had she had any issues.

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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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@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

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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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

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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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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