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.

@peach414144

Thank you, thank you, thank you. But.....what is this lying "In the machine"? I am claustophobic and have PTSD. I was never told this. Is this an MRI MACHINE? THEY DO HAVE OPEN MRI MACHINES NOW. But the open one I have used you must be sitting up and not lying down. And now with this AFIB I must be very careful of taking drugs. You have not confused me but have given me important information that I need to know. I will now call ack to get the full information that I should know about. Again I thank you for being so thorough. For I have to pay a driver (Low vision) cannot drive.) And, how long will the driver wait. I will not get used to this dependency as I was the one who did the caring for. Working hard on this physically and mentally. Will let you know.

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I too am claustrophobic. When having a CT scan and having to be inside the machine, I simply closed my eyes and listened to the provided music and I did fine. My suggestion is to close your eyes BEFORED going into the machine and just listen to the music.

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This is the second time I have been shut out as I am typing. What am I doing wrong? Where are my posts? All this machine wants to do is create an appointment for me. This is wrong. I have my own mind to make my decisions. Mayo is way to far away and there is no highway to there from where I live and quite a number of back streets to travel there. I know because I have already been there for another problem. So please stop stopping my posts.

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I just received my pacemaker 4 days ago on Thursday, for Bradycardia. The site is still quite bruised and tender. I was told what the pacemaker does but not about any weird side affects. So I was wondering if anyone else has felt like they could feel it working or feel a slight twitching of the skin or small pains.

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@cody1

I just received my pacemaker 4 days ago on Thursday, for Bradycardia. The site is still quite bruised and tender. I was told what the pacemaker does but not about any weird side affects. So I was wondering if anyone else has felt like they could feel it working or feel a slight twitching of the skin or small pains.

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Hi Cody1-
I am also a pacemaker recipient for Bradycardia and have had my pacemaker for the past 25 years. (I have had 5 batteries replaced already) since my initial surgery. I vaguely remember being sore and that I was not to raise my arms above my head for two weeks until the site healed. I wore button up shirts as it was easier to get dressed. Living in MN, I am a freeze-baby so that was a challenge for me, especially since my initial surgery was in October when it is staring to get chilly here. At the time of my surgery, my underlying heart rate was 38-40 beats per minute. A normal heart rate should be between 60-100 beats per minute. Currently, I am about 90% dependent on it. Do you know what your underlying heart rate was? What are you feeling? While I can't speak for every pacemaker recipient, I do know that everyone's symptoms are different. Do you know if you have a dual lead pacemaker (two leads threaded into the heart) or single lead? Typically, at your one month follow up visit, the cardiac nurse will set you up with a transmitting device that you will hold to your chest to transmit a monthly or bi-monthly basis to your cardiologist so that he can see what your heart is doing. I usually check my pacemaker about every three months in this fashion. It there is a problem with the transmission, the cardiologist or his nurse will call you. Depending on how much you use your pacemaker, the battery life is usually 10-15 years but it could be longer. Mine typically run about 10 years before I need to have it replaced. The replacement surgery is usually a quick one and it's a day surgery, so you don't need to stay overnight unless your cardiologist thinks you would be better staying overnight. I hope this helps- if you have additional questions, please feel free to reach out. Wishing you a super day and a speedy recovery. 🙂

Warmest Regards,
Sherry Kirby

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Are you having problems with yours? I’ve had one just a few months. Sometimes it hurts, but that’s the only issue.

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In reply to @balubeje "Thank you." + (show)
@balubeje

Thank you.

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Is this group still active? Have had a pacemaker for 2 years. Initially no problems, but now I have terrible pain in my left arm below my shoulder and above the elbow. I have been to 3 orthopedists and my electrophysiologist. They all recommend PT, which I am receiving, but I do not think I should have such debilitating pain. I can't get anyone at Yale New Haven Hospital to help me. They ALL say it's not the pacemaker, and I think it is!! Whose body is this??? I had a pikk line for chemo in this arm (left) 15 years ago, but now I get debilitating jolts of pain that take my breath away. I'm at a loss as to what to do next. Any thoughts??? Thank you. Pat

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@pngbee74

Is this group still active? Have had a pacemaker for 2 years. Initially no problems, but now I have terrible pain in my left arm below my shoulder and above the elbow. I have been to 3 orthopedists and my electrophysiologist. They all recommend PT, which I am receiving, but I do not think I should have such debilitating pain. I can't get anyone at Yale New Haven Hospital to help me. They ALL say it's not the pacemaker, and I think it is!! Whose body is this??? I had a pikk line for chemo in this arm (left) 15 years ago, but now I get debilitating jolts of pain that take my breath away. I'm at a loss as to what to do next. Any thoughts??? Thank you. Pat

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Hi @pngbee74 Welcome I see your experience some pain in your arm? Interesting I had a pacemaker with defibrillator for about 10 years and can't say I had any pain in my arms. Does your pacemaker so a defibrillator? The kind of pain your describing sounds like a shock but at.least when I had to gets delivered a treatment It was brief and in my chest. I noticed you talked about TKR in another post could it have something to do with that? I'm not familiar with that problem but I also know that pacemakers usually only can affect the heart area . I have heard of people complaining about a strange sensation from the leads of the pacemaker but usually there in around your heart area. The only problem I remember is an itchy type feeling at the pacemaker location . But I also know any issues with the pacemaker itself will be recorded on the device and the EP doctor can check that when they download the pacemaker. Let me know n if I can help further and what type you have.
Blessings

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@danab

Hi @pngbee74 Welcome I see your experience some pain in your arm? Interesting I had a pacemaker with defibrillator for about 10 years and can't say I had any pain in my arms. Does your pacemaker so a defibrillator? The kind of pain your describing sounds like a shock but at.least when I had to gets delivered a treatment It was brief and in my chest. I noticed you talked about TKR in another post could it have something to do with that? I'm not familiar with that problem but I also know that pacemakers usually only can affect the heart area . I have heard of people complaining about a strange sensation from the leads of the pacemaker but usually there in around your heart area. The only problem I remember is an itchy type feeling at the pacemaker location . But I also know any issues with the pacemaker itself will be recorded on the device and the EP doctor can check that when they download the pacemaker. Let me know n if I can help further and what type you have.
Blessings

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Thanks for your input. The pain is in my shoulder and left arm. There is no relation to the total knee replacement (TKR). I do have follow up from my electrophysiologist and have a home monitor, which is checked automatically. I have regular follow up appointments. Regards, Pat

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@danab

Hi @pngbee74 Welcome I see your experience some pain in your arm? Interesting I had a pacemaker with defibrillator for about 10 years and can't say I had any pain in my arms. Does your pacemaker so a defibrillator? The kind of pain your describing sounds like a shock but at.least when I had to gets delivered a treatment It was brief and in my chest. I noticed you talked about TKR in another post could it have something to do with that? I'm not familiar with that problem but I also know that pacemakers usually only can affect the heart area . I have heard of people complaining about a strange sensation from the leads of the pacemaker but usually there in around your heart area. The only problem I remember is an itchy type feeling at the pacemaker location . But I also know any issues with the pacemaker itself will be recorded on the device and the EP doctor can check that when they download the pacemaker. Let me know n if I can help further and what type you have.
Blessings

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Good evening, after seeing your post that you have a pacemaker and defibrillator you got my attention. I just need to talk to someone. I have both as well, a couple weeks ago my defibrillator went off 5 times while I was taking a shower. I stayed a week in the hospital on blood thinners and waiting on an ablation for afib. Since this incident I have been very depressed and full of anxiety, so bad that I have thought about having the shocking function cut off. I am so full of anxiety I feel like I’m losing my mind. Do you have any help advise.

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