Pacemaker & ICDs: Introduce Yourself & Meet Others

First, I really appreciate the availability of a forum where I can learn from stories of others who generously share theirs. I joined the "club" last Friday (4/18/25). I have been a recreational runner for 45 years. In Oct 2023, after running 4 miles, I could not run 50' the next day! I experienced severe shortness of breath to the point of having to stop or else lose consciousness. Cardiologists (not from Mayo) eventually located a severe blockage of the LAD. Without recounting the long road to get there, I eventually had robotically assisted CABG surgery on Valentine's Day this year. This operation was supposed to relieve my intermittent, recurring shortness of breath. After a month of recovery, I resumed jogging. Everything was great until my shortness of breath recurred several times. Then last Wednesday I could not take my blood pressure because it couldn't detect my pulse. I went shopping with my wife. After walking from the parking lot to Walmart, I was so out of breath that I had my wife drive me home. She took me to the ER (she pushed for Mayo thankfully) where I was treated in the ER with an external pacemaker affixed and a crash cart on standby. My heart rate was in the low 30s. I could barely function. I was admitted and sent to the cardo floor. On Thursday I had an angiogram which ruled out any blockages including my recent CABG surgery. On Friday I had my pacemaker installed with a range of 60-140. While in the recovery area I noticed my heart rate at 45! Turns out that the configuration had to be adjusted which an excellent, tenacious engineer did after 2 hours. I went home Saturday. I've walked 3.25 miles Sunday, yesterday and hope to today. I should be able to run in 2 weeks. I suspect that my pacemaker settings will change over time. Thanks to all for all advice and shared experience.
Ted

Hi
I had a pacemaker defibrillator inserted in 2017 after being diagnosed with acquired long QT syndrome. Recently it had to be removed because a lead was covered with Staphylococcus lugdunensis. I had a subconscious Medtronic’s defibrillator inserted, then reposition due severe pain and 2 months later I still endure daily pain. I can’t lean against touch or move around in bed. I have asked that is removed and an ICD replace in my chest understanding that re infection may occur. Has anyone else had pain issues with a subcutaneous defibrillator?
Nina

@nlfowler
I am on my 3rd ICD/Pacemaker.

My Mayo EP told me the biggest danger from a ICD/Pacemaker surgery is infection.

Asked your EP or surgeon did he find scar tissue in the area of the ICD/Pacemaker? I know when I had my last device surgery my EP said he had to remove a lot of scar tissue around the device.

I am not sure what a subcuteanous defibrillator is. Is it outside the body? Mine device is below my chest muscle. This was done as I did not have much skin to accommodate my device and the fact I was very active. From time to time it does get irritated (area around device) if I use my arms to much.

Did the take your lead out?

A subcutaneous defibrillator is implanted on side of your body below the Brest and the leads do not enter the heart. I had and ICD in my chest that never gave me problems in the 8 years I had it.

@nlfowler
If I read right the pain and discomfort is coming from a subcutaneous defibrillator that is put in body with no wires and is totally different that an implanted ICD/Pacemaker with wires going to heart.

I was not familiar with the subcutaneous defib and thought it was a type put under skin with wires verus the way mine was put below muscle.

My answer should have been I have no experience with subcutaneous defib.

The subcutaneous defibrillator is under the skin, it still has wires they just don’t go into the heart.

My name is BarbH. My husband Bill has had a PM for several years. In February, it was replaced with a defib one. He describes this replacement as being the most debilitating of all his operations, including a knee replacement and quad bypass in the same week. (He also is entering stage 5 Parkinson’s which doesn’t help.)
Has anyone had such a reaction to a defib? If so, any suggestions on how to deal with it?

I am a little confused by your post.

Why did they change his PM to a ICD?

A ICD is put in the same way a pacemaker is. I have had a ICD/pacemaker since 2006 and on my 3rd device. All my surgeries went fine and were done as an outpatient.

Talk to your doctors about his Parkinson's causing his reaction to the surgery.

When you say reaction to defib are you saying the surgery or being shocked? If it is being shocked that is another whole scenario of how to best deal with them.

I would like to know what part has been debilitating for him. Some thoughts: pocket is expanding due to the larger size of an ICD, the incision , the ICD’s location: under chest muscle rather than on top of it. Interested in more details.

I’m confused myself. He had decreased heart function and got a PM. We thought it had a defib, apparently it did not, only a monitoring one. He developed a ‘pre-beat’ and then Afib. His cardiologist referred him to an electrocardiologist, expecting a certain ICD to be inserted.

What he did receive was not a ‘heart-strengthening’ ICD but simply one that would shock the heart if needed. Apparently there is a difference. The ICD has a third wire; the vein the dr wanted to use was blocked so he called in an interventional cardiologist to clear it. Our follow ups with the electrocardiologist were very unsatisfactory; he wouldn’t even tell me the name of the vein he used and didn’t post any information on Bill’s portal or the hospital records to say what was done. Our cardiologist couldn’t even get a copy. Four meds are standard following this, he was only on one he’d been on for awhile, the electrocardiologist did not add any.

When I say his reaction to the defib, he had several issues. He did not receive any shocks. His entire left arm, shoulder and chest were very bruised and remained red for almost two and a half months. I asked if there could be a bleeder but was told this was all normal. He was given numerous tests prior to the defib which gave 3 different functional readings in the 40s and 30s. It has now been determined that the heart is at 31%. He is even more tired, exhausted and weak since the surgery.

We don’t believe the Parkinson’s changes caused the reaction to the surgery weakness-wise, it is normal Parkinson’s progression; the electrocardiologist and cardiologist say the instruction to not elevate his arms initially and his strict adherence to that resulted in partially frozen joints for which he is now getting therapy.

At our cardiologist visit this week, three outcomes are possible. 1. The heart will stop; the defib will take care of that. 2. Aspiration and congestive heart failure will occur; metropolol was added to the lisinipril to help strengthen; we’ll take a break for a month before adding one med at a time. 3. No further changes at this time.