Pacemaker & ICDs: Introduce Yourself & Meet Others

Hello to all! I am a 81-year-old lady & had my pacemaker put in in 2017 & it was replaced in November of 2024. I had a heart attack in 1975 & have a left bundle branch block.
Now I have LVEF rate of 35 to 40 % & will need another Echo in October to see if it has gone down some more. If it has gone down some more the doctor wants to put in a defibrillator combined with my pacemaker. Living alone I worry about getting shocked.
I would apricate your opinion on getting the defibrillator or not?
Thanks

@bluelady44
I have had a ICD/Pacemaker since 2006. I am on my 3rd one and have about 3 years left on battery for number 3. I have experienced shocks and can pass on my experience with this. I got cardiomyopathy from a virus and caused a LBBB.

First, my local cardiologist advised me at a 30 EF a ICD is recommended. I was at 30 EF then but no side affects other than PVCs.

I went to Mayo Jacksonville for second opinion. The EP there advised he would recommend both a ICD/Pacemaker. The ICD is recommended at that EF but he also wanted to address my electrical problems with a pacemaker. He referred me to heart failure doctor for consulation also who recommended the latest medications for HF.

I chose to change my care to Mayo Jacksonville. My HF doctor put me on Entresto and cardividol both high dose. My EP did the ICD/Pacemaker implant. My EF stablized at around 25% and has stayed there for over 10 years. In addition to HF medications I have been put on medications for PVCs.

Over the 20 years now that I have had an ICD/Pacemaker I have been shocked several times. They were traced to specific reasons (recorded by device). Those reasons were addressed by changing programming of Pacemaker and additional medications.

For coupe of years now no (knocking on wood as I type that) shocks. Now what can I say about getting shocked. What I was told several times by my EP is: "A ICD is like having your own EMS team ready to act anytime you need it." As you know a ICD shock is highly affective to corecting arrymymias. A ICD shock is not going to fix damage caused by having a heart attack but it highly effective correcting tachacardia and arrymmias (spell).

Now my experience and my opinion on having a ICD. I don't think I would be here typing this if I did not have a ICD/Pacemaker. It has brought me back to normal rympthm many times. The affect on you when getting a shock is very different from each person to the next. Some say not a big deal and some will say a big deal. I can't tell you what you will feel just what I did.

I have learned now over the 20 years I have had one that I am thankful I have one. I know it is there if needed. It takes time for a EMS to get to your locations and administer a shock. At 4 minutes into tachacardia, etc. problems start. So a ICD in your chest monitoring you 24/7 and seconds to respond when needed is far different than the time it takes for EMS to be notified, drive there, set up shock, and then shock you.

Pacemaker & ICD

Pacemaker & ICD is what I have.COMBO OUTFIT.

I too live alone and had an ICD placed two months ago due to NSVT. I am happy I have it. I have never fainted and haven’t been shocked. I am not aware when I have brief (max of 8 seconds) episodes of VT. They tell me that this is because have a normal ejection fraction and an otherwise normal heart. All tests were negative to determine a cause. These tests included MRI of the heart, sarcoidosis, amaloidosis, genetic testing looking for an arrhythmia gene, and exercise stress test with immediate echo following it. They see an old scar in my heart and have attributed my VT to that scar -probably from a virus- can even be from a cold. The scar interrupts the normal electrical impulses and their pathway within the heart. Amazing more people don’t have heart scars from colds.

I was advised to immediately sit down on a sofa( if possible) if and when I feel faint to avoid hitting my head on the way down.

I have the combo pacemaker/defibrillator. I am 81 no problems yet. 4yrs.

Hi! I’m Diane. Just found this site - after getting a ICD about 3 wks ago and would like to know about others experiences with ICDs.
My initial experience has been less than optimal! One lead came out before I even got back to recovery room and I had to have a 2nd surgery back to back with the first to replace it 😡.

3 days later, at home preparing for bed - about minute my heart started racing and I went into AFIB (first AFIB since getting a very successful ablation 1&1/2 yr ago). Before I could get to the ER - the damn ICD zapped me (4times!) shocking (pun intended - as I did not think AFIB would set it off - only Tackycardia and/or sudden cardiac arrest. I then called 911 and went into ER via ambulance and hospital stay for 3 days; discharge papers from the hospital showed “inappropriate shock/therapy” — and my ICD was re-programmed, presumably so that AFib would not trigger it again - however I am still very anxious about this thing - over which I have no control!
I would love to hear from others if you with ICDs

I am a male 66 y o (today), who had mitral and tricuspid valve repairs in Dec 2023. In in early August, of 2025, I had an horrendous motor vehicle accident. A few days later, I guess as a result of extreme stress hormone release from the accident. I had 10 ICD shocks within, I think, a few minutes of each other. I believe this to be a very typical case of VT/VF storm. Interrogation of my device showed that the shocks were for real VT/VF. In retrospect, I realized that I was having the same "aura" on several other occasions (consisting of whole body tingling and lightheadedness), in previous months. At those times, the episodes were either non sustained or controlled by ATP (anti tachycardia pacing). The shape (morphology) of the VT/VF indicates that the foci for the arrhythmias is scar tissues around the mitral valve annulus (opening). I pray that an ablation can eliminate most of my arrhythmia burden. Right now, I am afraid to live, from moment to moment, for fear that something amy initiate another another shock, or run of shocks.

@dianemari
It has been a long time but many years ago I went into a local hospital as they though my leads got infected. I went into AFIB but they waited for me to self convert overnight.

Turned out leads were not infected (did blood test that took several days). When I saw my EP at Mayo I asked why did not my ICD shock me back in rympthm for my AFIB. I was told it was for ventricles VTAC.

Then came the AFIB biggest worry to EP and cardiologist is causing a stroke from blood clots.

So sorry to hear about your experience!!! I can relate as (I posted above) just 3 days after I got my ICD implanted (twice, it turned out, as one of the leads was dislodged before I even got back to recovery room from surgery and I had to go back for a second surgery.)
That trama, much like your car accident, caused me to have a bout of AFIB (at about 1am in the morning!) and heart rate of over 200 - causing my ICD to shock me - 4 times. (That was horrible! I cannot imagine 10 shocks!) I went to ER and stayed in hospital 2 more days.
Key thing I wanted to mention to you is two things: (1) Before I was discharged from the hospital - my ICD was re-programmed to have much higher protocols (my discharge papers indicated my ICD shocks were “inappropriate.” I agree!) Specifically, mine was re-set to shock at a much higher heart rate and related).
You may want to talk to your doctor about having yours re-programmed. But maybe more important to consider, because I really appreciate your anxiety, is that the event causing your ICD to activate (the car accident) was an extremely traumatic and rare occurrence - hopefully not to recur again!
Do tell your doctor about your (very reasonable) anxiety. One nurse at the hospital compared such events to those causing PTSD.