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

@kanaazpereira

Hello @lmclaugh,

Welcome! May I ask, what brings you to the Connect community?

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I thought it could be helpful information since I also have a PM and have questions at times.

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@lmclaugh

I would like to join; my pacemaker was placed in 2016 for bradycardia (and bundle branch block).

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@lmclaugh
Howdy, glad to meet you.

I am wondering about your bundle branch block. Please clue me to your signs that you exhibited.

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@kanaazpereira

Hello @lmclaugh,

Welcome! May I ask, what brings you to the Connect community?

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Welcome aboard. My PM placement was in June of 2015 for bradycardia. An echo tech mentioned RBBB (right bundle branch block) back in 2015 but no one else mentioned it except to say no. I currently have asymptomatic bouts of atrial fib that is being worked up to see if they can find the cause. Today I had a PET CT scan, which is the second of several tests I have to do. The first being the good o blood draw-that all came out normal. PTL on that. I was also started on Eliquis to keep my blood thinned. Future test will be a repeat ECHO and an at home sleep apnea test. I am usually very good at working out a minimum of 3 times a week at Curves and we live on a street with an incline so I walk the dog around the block hitting two inclines no matter which way I go-that speeds up the heart. Everything I had done in 2015 came back good I just had issues with 6 second pauses on my 30 day holter monitor. There are days I feel more sluggish than usual but I don’t think I would have put much thought to my heart being the cause so I am very grateful for the quarterly remote checks. Stay connected with your cardiac team and if it doesn’t feel right check it out.

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@lmclaugh

I would like to join; my pacemaker was placed in 2016 for bradycardia (and bundle branch block).

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I did not have too many bothersome symptoms from the bundle branch , a little lightheaded occasionally. It was the bbb with bradycardia together, that produced more problems. Signals were not getting through and I could feel pressure radiating into my face and slower pulse.

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@lmclaugh

I would like to join; my pacemaker was placed in 2016 for bradycardia (and bundle branch block).

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Thank you for your response. I have brady, right branch bundle block, and sometimes when I walk at a quick pace for a distance of about 1/2 mile, like when I go to the community college for a class, then sit down within about 15 minutes I am out like a light for a short period of time. At one time I stood up (about 18 years ago) and had to grab onto the workbench until I was steady. Was a bit light headed.

Seeing my cardiologist in December with the screen shot from one of the most recent episodes where I had heart rate 102 from th walk, then it dropped to about 40 after I sat down for the training session I had to attend. So, I’m glad you responded a bout your experience. Now I can see the potential relationship between the RBBB and the times I seem to go out like a light.

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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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Everyone’s need is unique, and pros and cons must be thoroughly discussed to determine the best choice for yourself. I don’t have a PM; however, I have an ICD (which I’m told can be used as a PM if needed)primarily for security and peace of mind. I had V-tach while I was in the hospital. Although my heart was able to come out of it on it’s own, having poor ejection fraction, strokes, and clots, the health care professionals said it would be a good thing to have just in case. I too was concerned about all those things you mention. I don’t recall being awake for the procedure, but if I was it was one of those conscious sedation things where you don’t remember anything. My surgery went fine, and yes there is risks during that time, but any surgery has risk. My recovery went fine and I’m able to do all I did previously, except have an MRI. if I wear a shirt with a chest pocket, I’ve been able to put keep my phone in my pocket and not have any problems, nor have any problems been detected in any of my follow-up visits or digital downloads. I’ve had mine now for 4 years. Luckily as an ICD, my battery is going to last much longer than usual as I’ve not had any events causing it to fire. My ‘bump’ has always been body temperature, and after it fully healed, has never caused any pain or discomfort. knowing now that it hasn’t needed to fire does seem like it was over-preventive; however, having that peace of mind really speaks HUGE volumes. Going through airport security isn’t a huge issue, I carry my card with me, and generally involves a hand wanding if the walk through machine beeps. Again, minor inconvienience knowing I’m protected just in case. To me if a PM is being recommended or suggested, then their is enough going on to warrant having one. I had anxiety about getting one, and even after having it implanted. But at this point, I’m happy to have it, and would even do it again knowing what I know now that it wouldn’t be needed for 4 years at least. Who knows what will happen in the next four years? All I know is it’s there if I do have an event. I wish you the best!

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@gr82balive

Everyone’s need is unique, and pros and cons must be thoroughly discussed to determine the best choice for yourself. I don’t have a PM; however, I have an ICD (which I’m told can be used as a PM if needed)primarily for security and peace of mind. I had V-tach while I was in the hospital. Although my heart was able to come out of it on it’s own, having poor ejection fraction, strokes, and clots, the health care professionals said it would be a good thing to have just in case. I too was concerned about all those things you mention. I don’t recall being awake for the procedure, but if I was it was one of those conscious sedation things where you don’t remember anything. My surgery went fine, and yes there is risks during that time, but any surgery has risk. My recovery went fine and I’m able to do all I did previously, except have an MRI. if I wear a shirt with a chest pocket, I’ve been able to put keep my phone in my pocket and not have any problems, nor have any problems been detected in any of my follow-up visits or digital downloads. I’ve had mine now for 4 years. Luckily as an ICD, my battery is going to last much longer than usual as I’ve not had any events causing it to fire. My ‘bump’ has always been body temperature, and after it fully healed, has never caused any pain or discomfort. knowing now that it hasn’t needed to fire does seem like it was over-preventive; however, having that peace of mind really speaks HUGE volumes. Going through airport security isn’t a huge issue, I carry my card with me, and generally involves a hand wanding if the walk through machine beeps. Again, minor inconvienience knowing I’m protected just in case. To me if a PM is being recommended or suggested, then their is enough going on to warrant having one. I had anxiety about getting one, and even after having it implanted. But at this point, I’m happy to have it, and would even do it again knowing what I know now that it wouldn’t be needed for 4 years at least. Who knows what will happen in the next four years? All I know is it’s there if I do have an event. I wish you the best!

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Thank you. That is helpful and encouraging. I have heard of the ICD. I know I am afraid to not have a pacemaker. For my family if nothing else. I had the sedation thing for cataracts but I don’t think that would be enough for having my heart wired. I have a lot of questions for the doctor but in the end, I think I will have to have it done. Thank you for sharing.

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@gr82balive

Everyone’s need is unique, and pros and cons must be thoroughly discussed to determine the best choice for yourself. I don’t have a PM; however, I have an ICD (which I’m told can be used as a PM if needed)primarily for security and peace of mind. I had V-tach while I was in the hospital. Although my heart was able to come out of it on it’s own, having poor ejection fraction, strokes, and clots, the health care professionals said it would be a good thing to have just in case. I too was concerned about all those things you mention. I don’t recall being awake for the procedure, but if I was it was one of those conscious sedation things where you don’t remember anything. My surgery went fine, and yes there is risks during that time, but any surgery has risk. My recovery went fine and I’m able to do all I did previously, except have an MRI. if I wear a shirt with a chest pocket, I’ve been able to put keep my phone in my pocket and not have any problems, nor have any problems been detected in any of my follow-up visits or digital downloads. I’ve had mine now for 4 years. Luckily as an ICD, my battery is going to last much longer than usual as I’ve not had any events causing it to fire. My ‘bump’ has always been body temperature, and after it fully healed, has never caused any pain or discomfort. knowing now that it hasn’t needed to fire does seem like it was over-preventive; however, having that peace of mind really speaks HUGE volumes. Going through airport security isn’t a huge issue, I carry my card with me, and generally involves a hand wanding if the walk through machine beeps. Again, minor inconvienience knowing I’m protected just in case. To me if a PM is being recommended or suggested, then their is enough going on to warrant having one. I had anxiety about getting one, and even after having it implanted. But at this point, I’m happy to have it, and would even do it again knowing what I know now that it wouldn’t be needed for 4 years at least. Who knows what will happen in the next four years? All I know is it’s there if I do have an event. I wish you the best!

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@ ryman, @gailfaith here. Getting an pacemaker is one of the easiest surgical procedures that they do. And the fact so many are done, finding an experience surgeon is also fairly easy. I had mine implanted in April of 2016 and have had no issues with it. Just be aware that if you have any questions about it, call the practice that implanted it and usually they can check remotely. right from the ‘Control’ box that you come home with. I had a question about mine once and when I called my PCP ‘s office, I was talking with their nurse practitioner. She said to go to the hospital to have it checked. Didn’t need to. It can be checked remotely as they will be doing that periodically without you even being home It is SOOOoooooo comforting to know that something besides my aging body is controlling my heart!!! 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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(shortshot80)Hi ryman, I have had a pacemaker now for almost 10 years and I have gone through airport procedures several times, have had a cell phone no problems. I am in line for a replacement soon. I understand I will be awake also. I’m sure they give a relaxing shot, but not enough to put you to sleep. The pacemaker is just under the skin. A numbing shot I’m sure is given also and it only takes about fifteen minutes to install. I have not had any restrictions with my pacemaker. As far as a support group, you can voice your opinions here. I have to pay my doctor for what he tells me and if he says I need the pacemaker, (save my life) I feel it is a no brain’er. I am 84 and have several other problems than the pacemaker like two kinds of lung cancer. Nancy

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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 responding to the posts today regarding whether or not to have a pacemaker implanted. Mine was implanted nearly two years ago. It is very important to need this device and have that verified through tests and a second opinion by a cardiologist at separate clinics. If it is absolutely needed and resolves a serious problem, that is all good and you won’t second guess your decision if these steps are taken. Pacemakers can save lives but are also invasive and can cause other problems during and after implantation. That is a fact and a good Dr will be honest about that and insist you have the facts.

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@gr82balive

Everyone’s need is unique, and pros and cons must be thoroughly discussed to determine the best choice for yourself. I don’t have a PM; however, I have an ICD (which I’m told can be used as a PM if needed)primarily for security and peace of mind. I had V-tach while I was in the hospital. Although my heart was able to come out of it on it’s own, having poor ejection fraction, strokes, and clots, the health care professionals said it would be a good thing to have just in case. I too was concerned about all those things you mention. I don’t recall being awake for the procedure, but if I was it was one of those conscious sedation things where you don’t remember anything. My surgery went fine, and yes there is risks during that time, but any surgery has risk. My recovery went fine and I’m able to do all I did previously, except have an MRI. if I wear a shirt with a chest pocket, I’ve been able to put keep my phone in my pocket and not have any problems, nor have any problems been detected in any of my follow-up visits or digital downloads. I’ve had mine now for 4 years. Luckily as an ICD, my battery is going to last much longer than usual as I’ve not had any events causing it to fire. My ‘bump’ has always been body temperature, and after it fully healed, has never caused any pain or discomfort. knowing now that it hasn’t needed to fire does seem like it was over-preventive; however, having that peace of mind really speaks HUGE volumes. Going through airport security isn’t a huge issue, I carry my card with me, and generally involves a hand wanding if the walk through machine beeps. Again, minor inconvienience knowing I’m protected just in case. To me if a PM is being recommended or suggested, then their is enough going on to warrant having one. I had anxiety about getting one, and even after having it implanted. But at this point, I’m happy to have it, and would even do it again knowing what I know now that it wouldn’t be needed for 4 years at least. Who knows what will happen in the next four years? All I know is it’s there if I do have an event. I wish you the best!

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@gailfaith, thanks for sharing. There has been much advancement in pacemakers. I have observed one check of a pacemaker of an inpatient. very interesting. That was way back in 1990, 27 years ago when pacemakers left a lump almost as big as a computer mouse.

Now, thanks to you I have learned they are remotely checked and there is little need to go into an office or hospital to have them checked.

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Thank you. I know my daughter’s father-in-law has his checked remotely. I do feel a little anxiety about the surgeon who will do it. I have known him a long time and believe he is a good surgeon but am not sure about this procedure. I am told he is the only one that does it in this area. I am also concerned about being awake for the procedure. I was told by the doctor’s office that they would put me to sleep but I have read that they don’t. I was awake for cataract surgery and don’t want that.I have concerns about doing it and about not doing it.

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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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