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

@ryman

I am planning to get a pacemaker because my heart gets out of rhythm. But the more I read about it, the more afraid I am. First, I read that you are awake during the procedure. I don’t think I could do that. The feelings and meds and other things that might happen worry me. Also, cell phones, computers, etc. obviously you can use them but what are the restrictions? I do think a support group would be very helpful but I may end up choosing not to have a pacemaker after all.

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Thank you for the reply. It is very helpful and encouraging. I was thinking if I had to be awake, I would not do it. I was awake for a cataract. That was like 5 or10 minutes, not hours. It really scares me. But I am so extremely tired and so sick, I think I will have to have it done. I have known the surgeon for a long time. Just not sure about this type of surgery. Plus, we had a slight falling out a few years back over lung surgery that my PC chose the surgeon. I am told this is the only surgeon in this area that does this. I appreciate prayers and all the info I can get. The whole thing terrifies me.

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@ryman

I am planning to get a pacemaker because my heart gets out of rhythm. But the more I read about it, the more afraid I am. First, I read that you are awake during the procedure. I don’t think I could do that. The feelings and meds and other things that might happen worry me. Also, cell phones, computers, etc. obviously you can use them but what are the restrictions? I do think a support group would be very helpful but I may end up choosing not to have a pacemaker after all.

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@ryman, My thoughts are with you. I am not comfortable with the idea of having a gadget inserted into my chest with wires inserted into a vein. I worry that the vein will leak around the wires, but it seems from all those who live daily with this gadget implanted that it most likely does not happen or the vein compromise is very seldom. I also know the gadget does not truly reside in my chest at the depth of either my lungs or heart, but sits above my rib cage and is basically just below the surface. As for being awake during the surgery I can attest that being awake is not really a problem, but can give you a better idea how your health really is. When I had my tubal ligation many, many, many years ago I chose to be awake, listened while those performing the procedure discussed my female organ health and was glad I had chosen this method of sedation. When I had a colonoscopy I woke during the procedure and fell right back into a sedated state.

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@ryman

I am planning to get a pacemaker because my heart gets out of rhythm. But the more I read about it, the more afraid I am. First, I read that you are awake during the procedure. I don’t think I could do that. The feelings and meds and other things that might happen worry me. Also, cell phones, computers, etc. obviously you can use them but what are the restrictions? I do think a support group would be very helpful but I may end up choosing not to have a pacemaker after all.

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Ah, fear of the unknown….this will be more along the line of what was I so worried about. Very routine procedure and before long you will be able to guide others and give them the facts as they are for you. Many years ago when first pregnant and all the so called horror stories ladies just had to share with a newly pregnant soon to be mom scared me to death. I swore I would never share my story to leave fear behind in others hearts and mind. This is not something to fearful of. I’m sure more goes according to plan than not. I have a new normal and I can live with it…my alternative not so much. I am very grateful that a PM can assist is all types of heart concerns. My PM is very tiny and my scar is tinier barely visible and I can have an MRI with mine. Not that I want one. lol. I might suggest an EP-electrophiologist-mine was top notch and he teaches around the world and I love him to pieces. EP’s are specialists. Prayers…

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@ryman

I am planning to get a pacemaker because my heart gets out of rhythm. But the more I read about it, the more afraid I am. First, I read that you are awake during the procedure. I don’t think I could do that. The feelings and meds and other things that might happen worry me. Also, cell phones, computers, etc. obviously you can use them but what are the restrictions? I do think a support group would be very helpful but I may end up choosing not to have a pacemaker after all.

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I am wondering which brands are MRI proof?

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@ryman

I am planning to get a pacemaker because my heart gets out of rhythm. But the more I read about it, the more afraid I am. First, I read that you are awake during the procedure. I don’t think I could do that. The feelings and meds and other things that might happen worry me. Also, cell phones, computers, etc. obviously you can use them but what are the restrictions? I do think a support group would be very helpful but I may end up choosing not to have a pacemaker after all.

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My Medtronic card has Model # A2DRO1 along with 5676-45 and last but not least 5076-52. Now what all that means I have no clue. On the back of my card it states: I have a/an Advisa DR MRI SureScan Pacemaker implanted. Goes on to state: This patient has a complete MR Conditional pacing system implanted, consisting of a SureScan pacemaker and two SureScan leads. Goes on to say for important MRI safety information visit http://www.medtronic.com/MRI. Down in the far corner it states My device may trigger metal detection systems. I’m relatively sure the first numbers are the PM and the other two are the leads. Apparently, metal detectors CAN do some resetting of the PM values as can microwaves and cell phones I remember that in our conversations so I don’t stand and watch my food or whatever when in the microwave nor do I carry my cell in a pocket on the same side as the PM or do I carry on long conversations on my phone without switching back and forth from ear to ear. I try to err on the side of caution. The likely hood of this resetting or throwing off my PM is probably about the same odds of me winning the BIG LOTTERY. I just don’t chance it. Hopefully this is helpful.

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@ryman

I am planning to get a pacemaker because my heart gets out of rhythm. But the more I read about it, the more afraid I am. First, I read that you are awake during the procedure. I don’t think I could do that. The feelings and meds and other things that might happen worry me. Also, cell phones, computers, etc. obviously you can use them but what are the restrictions? I do think a support group would be very helpful but I may end up choosing not to have a pacemaker after all.

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(SHORTSHOT80) i am about four months from having my 11 year PM changed. My Cardo’ told me that all the new ones are MRI proof. I do send a report via the phone every three months. Mine is also a Medtronc PM too. Will see what happens after Christmas. Nancy

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Hi All,
I am facing the decision of whether to have a myectomy or continue to work with a cocktail of medicines to treat my symptoms. I met with Dr. Geske in December and learned that because I have a right bundle branch block, odds are that I will need a pacemaker for life. I”m comfortable with the idea of the surgery/recovery in exchange for getting off all this medicine (and its side effects) and probably feeling even better than I do with my medicine today. But I just have no idea about what life with a pacemaker means. I’m active — and hope to be a lot more active after surgery. Interested in hearing from people who have a pacemaker about the impact it has had on your quality of life. Thank you!

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Hi, @markjones — I thought I’d move your post here to introduce you to other Mayo Clinic Connect members who have mentioned pacemakers. Though I recognize not everyone’s situation is the same, I thought these members might have some insights for you as you are looking into the possibility of having a pacemaker for life and what that might look like. @hopeful33250 may also have some thoughts for you.

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Hello @markjones

Mayo Connect is a great place to connect with others who have had similar health experiences. I can certainly understand why you would like to get off the meds with their side-effects.

I am going to introduce you to some of our other Members who have mentioned Pacemakers. Perhaps they will respond with their experiences,
@lmclaugh @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98 @balubeje @marke92.

Teresa

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@lisalucier

Hi, @markjones — I thought I’d move your post here to introduce you to other Mayo Clinic Connect members who have mentioned pacemakers. Though I recognize not everyone’s situation is the same, I thought these members might have some insights for you as you are looking into the possibility of having a pacemaker for life and what that might look like. @hopeful33250 may also have some thoughts for you.

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I’m not sure the circumstance being faced…here’s the but-if you are facing the possibility of a pacemaker and your diagnosis is bradycardia I would be glad to offer what I know for me. You will find a lot of positive and informative people on this location.

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@lisalucier

Hi, @markjones — I thought I’d move your post here to introduce you to other Mayo Clinic Connect members who have mentioned pacemakers. Though I recognize not everyone’s situation is the same, I thought these members might have some insights for you as you are looking into the possibility of having a pacemaker for life and what that might look like. @hopeful33250 may also have some thoughts for you.

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Hi balubeje,
No my diagnosis is hypertrophic cardiomyopathy which doesn’t typically require a pacemaker, but the surgery to correct my thickened septum will likely impact my left bundle branch, and I already have a right bundle branch block, so that means I’d likely need a pacemaker for life because I would be completely blocked.
Thank you!
Mark

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@lisalucier

Hi, @markjones — I thought I’d move your post here to introduce you to other Mayo Clinic Connect members who have mentioned pacemakers. Though I recognize not everyone’s situation is the same, I thought these members might have some insights for you as you are looking into the possibility of having a pacemaker for life and what that might look like. @hopeful33250 may also have some thoughts for you.

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Thanks, Lisa! I see my original post now on this forum (separate post). I’d greatly appreciate any comments to it! To any of you who can provide feedback, it’s probably better to reply there than here since it provides the background and type of feedback I’m seeking. Thank you.

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@hopeful33250

Hello @markjones

Mayo Connect is a great place to connect with others who have had similar health experiences. I can certainly understand why you would like to get off the meds with their side-effects.

I am going to introduce you to some of our other Members who have mentioned Pacemakers. Perhaps they will respond with their experiences,
@lmclaugh @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98 @balubeje @marke92.

Teresa

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Thank you, Teresa! Hello to you all. I don’t know a lot about how pacemakers work and how they respond to different conditions to manage the body’s blood flow needs. It’s not the procedure itself or questioning the need for it that is my dilemma, but simply understanding what a pacemaker for life means from a day to day standpoint as compared to a heart that doesn’t require a pacemaker. If you have any thougths to share I’d greatly appreciate them! Perhaps better to reply to my original post just a little above so that the background is included for anyone else reading. Thanks!!

Liked by Lisa Lucier

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@hopeful33250

Hello @markjones

Mayo Connect is a great place to connect with others who have had similar health experiences. I can certainly understand why you would like to get off the meds with their side-effects.

I am going to introduce you to some of our other Members who have mentioned Pacemakers. Perhaps they will respond with their experiences,
@lmclaugh @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98 @balubeje @marke92.

Teresa

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My pacemaker became my new normal in June 2015. Personally I have bradycardia which is a slow heart rate. My heart rate was in the 50’s on a good day and low heart rates are usually found in runners and those “die-hards” who run marathons. I don’t fit that category though I do work out several days a week and walk two dogs routinely. On my physical exam a PA (physician assistant) couldn’t find my heart rate. Consequently I went through a whole slew of tests like echocardiogram, ekg, stress test and then a slew more when it was determined that a PM was to be inserted. One particular test found that my heart stops for as long as 6 seconds-this was found on a heart monitor I wore for a month. I have a two lead pacemaker-no defibrillator-I see one of the top EP’s in the world on a yearly basis and have my PM checked via remote 4 times a year. There are days when a nap is required but not a consistent concern. It has been determined that I have mild sleep apnea-which might be the cause of Afib that has developed over the course of time-which I am never aware of thus far but that might explain why this newest of onset. So last fall I was placed on a blood thinner. Hope you find this helpful. BTW: I do have a very strong heart-I just have issues with rhythm. So my heart relies on the PM and I’m pretty much oblivious to the times the PM helps out.

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@hopeful33250

Hello @markjones

Mayo Connect is a great place to connect with others who have had similar health experiences. I can certainly understand why you would like to get off the meds with their side-effects.

I am going to introduce you to some of our other Members who have mentioned Pacemakers. Perhaps they will respond with their experiences,
@lmclaugh @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98 @balubeje @marke92.

Teresa

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I am shortshot80) I have a pacemaker that I have had for 10 years now and in April i will have a new
battery put in. I have not had any pain, trouble of any kind and will be 85 in march. Good luck to you!

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