Pacemaker recipients: Looking for support from others

I’ve had a pacemaker/defibrillator since August 2021….feel great and have less anxiety with it than without it as I have ventricular tachycardia. There are times especially when laying down I feel like I can feel the pacemaker working… has anyone else felt this?

Thank you so much. This sure does help

Don’t know if this will help you but I was born with a defective heart involving the SA node (heart’s natural pacemaker) and the AV node, that commands the Ventricles to squeeze and pump the blood. I have what’s known as WPW, Wolff, Parkinson, White Syndrome. It causes my heart to go into Pulseless Ventricular Tachycardia (beats to fast). Bradycardia (beats to slowly, A-fib (chambers are out of sync) Spontaneous Blackout, and triggered 3 heart attacks.

I told you all that because my Electrophysiologist, a specialist cardiologist that treats all electrical aspects of the heart. In order to help me, he had to implant a $25,000 special loop heart recorder to monitor my heart 24/7. He made an cut by my left breast, inserted the device and positioned it were it needed to be by my Left Atrial Chamber, the company rep was right there and activated it. Like you, I was apprehensive about having it in my body for 5 years before replacement. Yes, it felt strange having something in my chest and can touch it thru my skin. Naturally I was fatigued for several weeks, the healing took awhile but went well. It was placed in me August 2021 and I can’t tell it’s there anymore unless I touch it. It shouldn’t be much different from a pacemaker other that the wires. I’ve had two major electrical events on November 25th and 28th, they were recorded and sent to my hospital’s heart lab because I had a nasty fall and knocked unconscious on the 25th. I’m glad my device worked when it should have and I was contacted by the hospital. So don’t judge your aches and pains for at least 6 months. Not related to the device, I was told if the pain feels dull, it’s most likely a chronic condition. If the pain feels sharp, have it checked. Sounds like good advice to me. Hope things go well for you. @becky1024

Thank you so much for your honest answer. These are all things i myself are going through. You helped me understand. God bless you

I think the first month is difficult for a lot of reasons. Physically, it takes awhile to get used to have something in your body. Little aches and pains, soreness. Regardless, you've had an operation before which you were likely tired. So, your body will still be recovering from the fatigue created by both the condition and the operation. Emotionally, I was very concerned about every physical feeling; was it normal? was it a problem? I was anxious about the restrictions. What would happen if I accidently did x, y, or z. Finally, while I wasn't aware of it at the time, the FACT that I HAD to have a pm implant took some time to accept. I am 3 months in now. I am back at the gym doing mild workouts and walking at home. I now understand the adjustment more as a process, likely quite varied among people. I can physically do more now with less effort; I am less fatigued; I don't worry as much about little small feelings of discomfort (still very careful about what, and how much, I do). Over the next months I anticipate 'moving along' to the next level. From what I have read, in the first three months the device 'settles' and is finally solid by a year. Medtronics (my pc maker) has a wonderful website and call centre with nice people and helpful material for reading. Look for a patient website by your pm maker if it isn't Medtronics. They will likely have one. Finally, know that you are not alone in this. People with pms are young, middle-aged and old, and do share their experience. Finally, check in periodically with your doctor or device clinic and ask about the things that concern you.

Its been 4 weeks and i dont feel much better. Please let me know youre experience

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.

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!

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.

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.