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 ryman...gailfaith here again. You mention that your Dr's staff told you that they don't use anesthesia. Just as my doctor's nurse practitioner gave me the wrong information, just ask the doctor himself. Most doctors will do what the patient wants as the bottom line! Get the info from the "horse's mouth".

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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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After reading the posts I am in awe how different directions the discussion has taken on the topic of the "pacemaker" For myself I was awake during the procedure. Somewhere, somehow I missed that part of the explanation prior to the procedure. I found myself waiting to fall into that happy oblivious moment and it didn't happen. The insertion site was in my happy place. BUT when I realized I could hear the whole conversation taking place around me I started participating. I think they were taken back but no one hushed me. I found it totally interesting and intriguing and they answered my concerns. I think our psych needs to grab and hold onto this new chapter in our lives. I also thank God that I had this option. Once the procedure was done we had to wait several hours at the hospital where the PM rep went over the PM with us-I received my event monitor that I use every 3 months to check my PM and just be sure all went well. My "restrictions" at the time that I can remember were: not to lift anything more than 5 pounds, no swimming, golf, tennis, bowling for 3 months. For 6 weeks the arm in NOT to go over the head or above the shoulder. Reaching for things in the cupboard was a concern so I left everyday items that usually sat in the cupboard out to avoid doing that just out of habit. Most are 6 week restrictions to give the leads time to "set". I was also given a sling to wear at night for a short time and to assist in not putting your arm over your head. You will receive a card to carry with you regarding your PM, I don't put my cell phone on the side of my PM nor do I stand near the microwave while I does it's thing as suggested by my EP. The airport or those devices used at the court house hasn't been a problem I just alert them to my PM and I get the wand. I did have to rearrange my "normal" exercise routine for a short while but I kept it up and I am learning how truly important exercise is. Prayers will be shared for peace of mind for you. This site is an excellent place to bounce off your concerns. Keep us posted.

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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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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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