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.

@balubeje

The middle of June I celebrate one year with my new "normal" life style. Years back I was diagnosed with junctional node rhythm and the way for me to have a NSR was to cough all the time, run all the time-literally so it was just accepted I was not meant to have a NSR. In Feb 2015 for several months I felt like my head was just not in the game-like I was in a fog or not receiving enough blood. Consequently I went through a bunch of tests but in Nov 2014 at my physical they couldn't feel my pulse which started off a series of test-I ended up wearing a monitor for a month which showed I had 6 second pauses in my heart beating. I have a strong heart, no calcifications, excellent system with a very good ejection fraction-I just have no rhythm. I am also on Metoprolol that I can vary. Yet I go through days where I don't even realize I have a PM and maybe weeks then I hit a period where it just feels like there is a battle with my heart so I'm not sure if its the PM working so much and the natural heart beat is resting more. Some days naps are my best friend.

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Wasanything done for the pauses?

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@bettysamny

I know if it goes below 40 it is bad. I so far never fainted.but got light headed and dizzy ..felt faubt after the moderna vaccine. .3 hours later. I had a pause incident of about 6 seconds three months later but ddin't feel or know it. Showed up on implanted ekg link. I know a pacemaker does not affect afib. How much metoprolol do you take? Do you have any side effects from the meds. .either..I never took flecainide. Are you tolerating it? Have you ever had an ablation? What were you taking before the incident for afib?

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In response to your questions, I take 50 mg of Metoprolol daily and 100 mg of Flecainide twice a day. I seem to tolerate both without problems, though I have read in this forum about bad reactions from others. Never had an ablation. I was taking no heart rhythm meds before afib was detected, but was then placed on Eliquis 5 mg twice a day for about 1 year until Last December, when I had a Watchman device implanted. After the implant, I was switched from Eliquis to Plavix (75 mg/day) plus 325 mg aspirin daily for the next 6 Mos. I hope that this info is helpful to you in your journey.

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What is the purpose of a watchman device?

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I was diagnosed with severe HF, LBBB and cardiomyopathy, I can barely do anything without being completely out of breath doing very little, after a exercise test with cath in place(horrible test! ) then 2 weeks with a monitor I am scheduled for a CRT December 12, at Mayo, I'm excited & nervous & would love to hear how this has helped others, I am 61, this was cause by chemotherapy and I was formally quite fit & active for my age.

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@denisern

I was diagnosed with severe HF, LBBB and cardiomyopathy, I can barely do anything without being completely out of breath doing very little, after a exercise test with cath in place(horrible test! ) then 2 weeks with a monitor I am scheduled for a CRT December 12, at Mayo, I'm excited & nervous & would love to hear how this has helped others, I am 61, this was cause by chemotherapy and I was formally quite fit & active for my age.

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My situation is somewhat different from yours but the feelings are likely similar. I have bradycardia and had a 2 lead pacemaker installed in Sept. 2022. Previously, I was moderately active: powerlifting and strength training, yoga and stretch and mobility. BUT, not enough cardio. I am 75. It was an unexpected shock. I am very cautious, perhaps too cautious, worried about doing too much in the cardio realm, and worried about weights. Having said that, I sleep better, don't sweat as much, and can walk with no difficulty. I am also back to yoga, stretch and mobility, and light weights. The pacemaker was an emergency, and it has taken some time to get used to it, mostly the needing it. 🙂 Honestly, it has given me my life back. I hope that with a bit of patience, it will do the same for you.

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@mfenn

My situation is somewhat different from yours but the feelings are likely similar. I have bradycardia and had a 2 lead pacemaker installed in Sept. 2022. Previously, I was moderately active: powerlifting and strength training, yoga and stretch and mobility. BUT, not enough cardio. I am 75. It was an unexpected shock. I am very cautious, perhaps too cautious, worried about doing too much in the cardio realm, and worried about weights. Having said that, I sleep better, don't sweat as much, and can walk with no difficulty. I am also back to yoga, stretch and mobility, and light weights. The pacemaker was an emergency, and it has taken some time to get used to it, mostly the needing it. 🙂 Honestly, it has given me my life back. I hope that with a bit of patience, it will do the same for you.

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Thank you for your reply! Yoga is what I miss the most so that you have gotten back to it is very encouraging, I have partly been afraid to return because my b/p does not need lowering! Thank you your encouragement. Namaste.

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@denisern

Thank you for your reply! Yoga is what I miss the most so that you have gotten back to it is very encouraging, I have partly been afraid to return because my b/p does not need lowering! Thank you your encouragement. Namaste.

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I had intermittent Afib, had a cryo Ablation in 2014. Did not work. Than an Ablation 6 month later. Worked for 6 yrs, no Afib. Than I started to get Brady cardia, and other irregularities. Been admitted for observation in hospital several times. In January 2022 again serious bradycardia and other arrhythmia problems.. This time a 2 lead Pacemaker was inserted . Am so happy ,so far no Afib or irregularities of my heart. I was on 100 mgr. Metoprolol twice a day which is now cut back to 50 mgr twice a day. Am also on xeralto 20 mgr. and Irbesartan 300 mgr daily , now it is already November and still do well. My B/P is also normal. Best wishes for all of you. I am almost 84.

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My journey started with chest pain and shortness of breath, I went to the Dr and ended up in the hospital for 2 days, I have not worked since, I am 61 and would love to return even 1 day a week, It was not in the plans to retire now, wow yoga at 84 is amazing! I hope to get back to that, between the panademic and my low b/p due to meds I just never got back to it. I hope things continue to improve for you and all the best to you as well!

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I was diagnosed with AFIB almost twenty years ago. I was highly symptomatic and finally had to retire 20 years earlier than I had planned. Over these years I had four ablations—one worked for almost six years, but the AFIB returned worse than ever. Finally, as my situation became more extreme, four years ago I had a total AV node block and a pacemaker that sends a constant signal in place of the crazy signals from my atrium. The situation isn’t perfect, but I no longer am suffering from EXTREME AFIB episodes that would last for weeks at a time. I still feel faint and short of breath at times and sense the quivering atrium, but the pacemaker does keep the regular beat going. I am hoping that research and technology will bring improvements to the way my PM works with my body. Also, I often wonder if all those ablations significantly scarred my atrium and that the continuing bouncing of electrical signals will always be part of my experience. I am 75.

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