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Pacemaker & ICDs: Introduce Yourself & Meet Others

Posted by Justin McClanahan, Moderator @JustinMcClanahan, Mar 12 1:59pm

Welcome to the Pacemaker & ICDs Support Group on Mayo Clinic Connect.

If you or someone you care about has had a pacemaker or an implantable cardio device (ICD), this is a great place to talk with others with similar experiences. Here, you will learn from one-another and share stories about surgery, recovery, lifestyle changes, successes, setbacks and what strategies helped other members on their journey.

Take these steps to participate in the group:

  • Follow the group.
  • Browse topics.
  • Use the group search to find relevant topics to your questions.
  • Introduce yourself.

Pull up a chair and chat. Why not start by introducing yourself? What type of device do you have? What tip would you share with others?

Interested in more discussions like this? Go to the Pacemaker & ICDs Support Group.

jc76 | @jc76 | 2 days ago
In reply to @barn67 "I have most of the issues you have also had my ICD/Pacemaker implanted 2016. Going to..." + (show)
@barn67

I have most of the issues you have also had my ICD/Pacemaker implanted 2016. Going to see my EP doctor tomorrow morning. Question I have is that about the last two weeks I have my heart rate spike 120-166 very short time device does not recognize spike do you have same issue? My device is Boston Scientific with one lead going to bottom chamber.
Is there any way we can have a phone conversation?

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@barn67
My first pacemaker was implanted in 2006. I am on my 3rd one. In 2016 is the year I had 5 shocks in 24 hours.

However that was the first time in 10 years that it shocked me. My EP determined they should not have turned off my pacing. They had turned it off due to high inpedience on the pacing wire that was depleting battery so thought I would be okay without pacing.

ER turned it back (pacing) and EP apologized saying it shows I do need it.

I have had tachacardia many times as well as a lot of PVCs. Your pacemaker should be recording those episosed so that you and your EP can go over what you were doing at the time it occurred.

Could be caffiene, stress, medications, etc. so mine and assume yours try to determine what is causing it.

For a small period of time I had the exercise mode turned on. I am an avid exerciser and a Pace Tech thought the exercise mode could help. It had not been turned on for 16 of the years I had one at that time.

It works on recognizing motion. It can be set at low, medium, high. Mine was set at high. Within a day I had this tremendous rush like adrenaline and felt my pacemaker pacing me. I had them turn the exercise mode off and did not experience that same feeling again and that has been several years.

If you are having heart racing could be tachacardia and there are a lot of medication to help with that. I am on several that have really helped. Talk to your EP about your spike in HR and the causes. If he feels medications can help just be sure you asked about side affects.

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jc76 | @jc76 | 2 days ago
In reply to @jackiet "Hi mfenn…. Can you explain the difference you feel when they upped the upper pace rate?..." + (show)
@jackiet

Hi mfenn….

Can you explain the difference you feel when they upped the upper pace rate? My problem is that I have this SOB and chest pressure when I walk for a distance at too fast a rate. I unfortunately don’t know whether the rate was below or above the 145 before they changed it.

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@jackiet
Just a question. Do you have the exercise mode turned on on our device?

It is a mode that recognizes motion or some other factor to raise your device pulsing.

I had mine turned off as did not like the feeling.

I have my pacemaker pulsing me at 70 bpm. Why? I take Entresto and Carvedilol which without my pacemaker my heart would be beating in the 30s. That very low rate I was having a lot of PVCs and irregular heart rhythm.

We tried 50 and PVCs were still high, then 60 and some improvement then 70 and found the best rate to reduce PVCs. I am a very active exerciser even do Sprint Triathlons, and my HR rarely gets above 110.

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1 reply
mfenn | @mfenn | 1 day ago
In reply to @joypalmer1 "Hi. I had an emergency pacemaker inserted three months ago. I was a relatively healthy and..." + (show)
@joypalmer1

Hi. I had an emergency pacemaker inserted three months ago. I was a relatively healthy and active 63 year old woman. I started to not feel well for two days and went to the ER. I was shocked when they immediately admitted me. I had a heart rate of 30 and within 20 minutes they told me I needed a pacemaker I had a complete electrical block. It was such a whirlwind and I’m still trying to wrap my head around it now. I have just started to go back to exercising. I think the hardest thing is mentally to adjust that I need a device to now keep me alive. Also, it feels what I can only describe as “creepy” to see the bump in my chest and totally feel the outline of the pacemaker. Any advice or suggestions are welcomed. Thank you.

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Just wanted to add a bit to jc76 about the exercising. I had a 31 bpm when I got my pacemaker in Sept. 2022. The pacemaker will allow you to be active again. My "thing" is strength training. Took off 12 rather than 6-8 weeks from exercise. Started slowly but steadily. Almost 3 years now. Cannot believe what I've been able to do. And, it brings me joy as well as strength.

Getting a pacemaker is a physical and emotional blow to our systems. It takes time to deal with it. There are ups and downs and it isn't easy. I felt old and weak, and fragile. I was afraid to exercise at first. I cried and whined and griped. You do what you need to do. And, it does get better. I will be 78 in two months.

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1 reply
mfenn | @mfenn | 1 day ago
In reply to @jc76 "@jackiet Just a question. Do you have the exercise mode turned on on our device? It..." + (show)
@jc76

@jackiet
Just a question. Do you have the exercise mode turned on on our device?

It is a mode that recognizes motion or some other factor to raise your device pulsing.

I had mine turned off as did not like the feeling.

I have my pacemaker pulsing me at 70 bpm. Why? I take Entresto and Carvedilol which without my pacemaker my heart would be beating in the 30s. That very low rate I was having a lot of PVCs and irregular heart rhythm.

We tried 50 and PVCs were still high, then 60 and some improvement then 70 and found the best rate to reduce PVCs. I am a very active exerciser even do Sprint Triathlons, and my HR rarely gets above 110.

Jump to this post

I can't be any help here. My Medtronic doesn't have an exercise mode. It is set for 60-150.
Also, I have never had a PVC nor do I have medication.

I am however, really impressed that you do Sprint Triathlons. Cardio is my weak spot. I used to run but the knees won't do that anymore. I can and should walk more but.....

Good on you!

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jackiet | @jackiet | 1 day ago

To jc76 and mfenn….

I do not know if my Boston Scientific PM has the exercise mode turned on. (I don’t have a ICD. ) But I will find out in two weeks when I see my ep. I do know that I am set for 60 to 150 bpm. Which I’m guessing doesn’t answer the question.

I marvel at the accumulated wisdom of you and others in this MCC group.

I am 89 years old as of today and still striving to improve my quality of life. And am extremely grateful to all of you helping me do that.

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1 reply
jc76 | @jc76 | 22 hours ago
In reply to @mfenn "Just wanted to add a bit to jc76 about the exercising. I had a 31 bpm..." + (show)
@mfenn

Just wanted to add a bit to jc76 about the exercising. I had a 31 bpm when I got my pacemaker in Sept. 2022. The pacemaker will allow you to be active again. My "thing" is strength training. Took off 12 rather than 6-8 weeks from exercise. Started slowly but steadily. Almost 3 years now. Cannot believe what I've been able to do. And, it brings me joy as well as strength.

Getting a pacemaker is a physical and emotional blow to our systems. It takes time to deal with it. There are ups and downs and it isn't easy. I felt old and weak, and fragile. I was afraid to exercise at first. I cried and whined and griped. You do what you need to do. And, it does get better. I will be 78 in two months.

Jump to this post

@mfenn
Great post and inspiration.

It does take time to adjust to it and is actually for me a blessing as I know it is there to help if needed. It does get better!

I will be 78 May 11th.

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jc76 | @jc76 | 22 hours ago
In reply to @jackiet "To jc76 and mfenn…. I do not know if my Boston Scientific PM has the exercise..." + (show)
@jackiet

To jc76 and mfenn….

I do not know if my Boston Scientific PM has the exercise mode turned on. (I don’t have a ICD. ) But I will find out in two weeks when I see my ep. I do know that I am set for 60 to 150 bpm. Which I’m guessing doesn’t answer the question.

I marvel at the accumulated wisdom of you and others in this MCC group.

I am 89 years old as of today and still striving to improve my quality of life. And am extremely grateful to all of you helping me do that.

Jump to this post

@jackiet
Hay that is why MCC is here. Glad to have helped in anyway.

Got my device all the way back in 2006 and on my 3rd one.

I will be 78 next month. You are 89, WOW that is long longevity. We need to ask you to help us with guidance on how we can get to 89 and your mental outlook of still striving to improve your quality of life.

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jackiet | @jackiet | 21 hours ago

Getting to 89 for me has probably got something to do with genes. But I admit to taking care of myself. When going through menopause years ago I was told by a doctor that small boned women from Eastern European countries (I am a Polish peasant from Buffalo) were prone to get osteoporosis. I therefore began pumping iron and working out, which I have been doing for the last 35 years.

Bradycardia only arrived four years ago. I guess I’m lucky.

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