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.

@soph

Sounds like you have the pulse of an athlete, 50-40. I have an 85 year old friend who also trains hard and has that same pulse. Hard to have two opinions, for sure! Congratulations on having kept so fit!!

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Thanks @soph .... I like your opinion better than my cardiologist

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@dragonass

Hi @colleenyoung . I am 80 years old play tennis 3-4 days / week for 1 1/2 hours (doubles) and have a personal trainer for 2 days/ week. I don’t have shortness of breath and am not fatigued. However my rating pulse is about 50 and sometimes in the 40s. I had an Echo Cardiogram and a TEE. They showed a significant murmur and left branch bundle block. My mayo cardiologist is suggesting a pacemaker. My local ( Honolulu) cardiologist agrees the results are poor but says that tests are tests and since I feel well and am active I shouldn’t have a pacemaker unless I want too. What do you think?

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Hi @dragonass, I am unqualified to tell you whether you should have a pacemaker or not. Only a cardiologist who can examine you and who knows your health history can answer your question. It is confusing to have get 2 different opinions. To make a decision, perhaps you might consider asking specific questions. For example:
- What are the potential benefits of a pacemaker for me? Do the benefits outweigh the potential risks of surgery?
- What are the risks of surgery in general and for me specifically?
- When should I consider a pacemaker, for example with which test result levels?

Dragonass, Can you think of other questions that would help you make a more informed decision?

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Support and sharing is a great idea. I will be 4 years post pacemaker in January. Many odd sensations the first 6 months and I was pacing 15 and 27 %. Suddenly at about 11 months post, my pacemaker was pacing about 80% more. I have wondered if the pacemaker itself triggered the dependence. I guess that I will never know.
I also regret not getting a second opinion at the time. I only say this now to encourage others to definitely get another opinion for peace of mind. It is also extremely important to be told that the pacemaker will impact tests (MRI-even if compatible) and increased chance of infection if having a surgery after getting a pacemaker. My Dr did not mention this.
Because of increased pacing and dependence, I get an annual ultrasound to check the ejection fraction and overall heart health. So far, so good. I exercise regularly and have good habits. Getting the PM before age 65 was a surprise and caused some depression. Also my resting pulse used to be around 50. Now it’s always 70-80 and occasionally higher. I don’t like this either but there is little I can do is my understanding.
Thank you

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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I have had a pacemaker for two years. Would be interested in connecting with others!

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I have 6 years with pacemaker and bracacardia Changed my lifestyle about two years ago. Once I found all the triggers for arrhythmia , that has almost stopped. Dr said it was less than one percent now. I highly recommend looking for your triggers. Especially alcohol in any form , Caffine , overworking , getting too upset, and anxious about things. If I drink any alcohol or take it unknowing in food. I have some good stories about this.

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Have posted here before. Had total heart block , level 3 In 2013 sinus quit working. Dr told me that I would have been dead had I passed out. I have bradycardia.,
Have major changes in lifestyle. Found several things that cause aarytems Now avoid them I now have a latitude ( little box that lab worker transmits data from at different times without disturbing me) in my den hooked to internet all the time. One word of caution exercise can cause blood pressure to go down too far u need to avoid this, mine could go below 100/40 now with lifestyle changes my aarythems ate less than 1 pct. I feel good

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I have a pacemaker for six years from total heart and then bradycardia one thing that took me almost four years to figure out is the triggers that cause aarythms. Most important for me was alcohol in any form and any amount caused that not right away but late after I had gone to bed. Also caffine - drink only because now, also stress getting too hot or really angry

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This is true for so many of use! The heart wants a calm life, no alcohol, no caffeine, no smoking, and not too much stress or too much work. The heart will tell us what is "too much" since we're all different ages and have different health situations. Those of us who are retired with already grown families have an easier time of doing just what the heart prefers! Life is usually hardest for younger people. It's good if we can help them out.

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I reluctantly got a pacemaker 12/23/19. One week check up said it was working about 18% of the time. I had bradycardia below 60 and MD thought pauses would lead to fainting. How has yours worked?

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I had a pacemaker implanted about one month ago. It is a Boston Scientific Pacemaker, demand type. My pulse was about 45-55 for many years. Recently I developed HOCM (hypertrophic cardiomyopathy) . My pulse never went up even when I exercised. I also have a Lattitude monitor by my bed that connects with Boston Scientific and my cardiologist daily. If there is a problem. It tells my cardiologist there is an issue. My normal life has resumed

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