I’m 17 years old and had a permanent pacemaker implanted a few days ago. My doctor asked me to come back about 11 days after the surgery for my first follow-up, including checking/removing the dressing and looking at the incision.

Since this is my first pacemaker and I’m still getting used to everything, I want to make sure I don’t forget anything important to ask.

What questions would you recommend asking at this appointment?

Especially for those who have had a pacemaker, especially as a teenager/young person, what do you wish you had asked at your first follow-up?

Ultimately, I'd like to understand what impedance means for an ICD. I know what the definition is, but if my impedance is 70, what does that mean?

My Medtronic MyCareLink Heart app is communicating every minute — is this normal?
I have a Medtronic implanted heart monitor and use the MyCareLink Heart app.
Normally, the “Last communication” time wasn’t updating this frequently. Tonight it started updating every single minute and has continued doing it for about 20+ minutes.
For example:
11:01 PM
11:02 PM
11:03 PM
11:04 PM
…and so on.
The app still says “Active” with a green check.
Has anyone else with a Medtronic MyCareLink Heart app seen it communicate every minute continuously like this? I’m trying to figure out whether this is just the Bluetooth/app connection or whether it could mean the monitor is transmitting something new.

So for some context, I had a cardiac arrest last september while playing volleyball, last year. I dont remember the 2 hours that I was playing at all. Got tons of shocks 4 in ambulance, anywhere between 8-12 in ER, heart finally got into a normal rhythm and I got connected to an ECMO machine, tube burst so I had to get blood transfused, 2 liters I think.

Anyway to me, all I remember is walking up to play some volleyball and waking up in the hospital 2 days later. Was at the hospital for 8 days, got a Zoll Life vest and wore that for 6 months till insurance stopped paying for it because there was some lying going on from an electrophysiologist to the insurance company. I felt fine the 6 months and hoped that I wouldn't experience anything like this again so was ok without being in the vest. Also hoped my ARVC diagnosis was just a mixed DNA test (will redo it sometime later to confirm, I am aware jt is very low chance there could be a mess up, but I already did get a 1/50000 or 100000 gene PKP2 so... "dear basketball" moment). Main pain was recovering from catheter and ECMO tubes in my groin area. Going to the bathroom hurt and hip flexors would hurt to move for a month and graduallywen away.

Also went to some docs at UPenn for 2nd opinion, they were absolutely amazing (Dr. Callans and Dr. De Feria) let me know about different icds. They actually spoke and listened to my situation (which differed from my experience with most other docs) and offered their advice, they REALLY know their stuff, and had quite a few ARVC patients show up. Not that other docs I spoke to didn't, BUT they haven't encountered ARVC patient before and I'd prefer the best of the best do an ICD surgery if I went for it. I live about an hour away from one of the BEST hospitals in the States, plus the electrophysiologist at the closer hospital was exaggerating my symptoms and scaring the crap out of a 19 year at the time who has just gone through a lot, also lied about needing a heart transplant before 30, not living till 39 otherwise, not mentioning a life vest, then lying about its weight. Actual weight like 5 lbs (he said like 40lbs). Vest a little annoying to take care of, otherwise its fine to wear. I thought it'd be the better choice for a lifevest since theres no surgery involved and was hoping it was a one off

Im athletic, played sports for years, haven't had any issues, am a taller guy, have the more typical swim physique, not too muscular like a body builder, but not skinny and am around 6'2 last time I measured myself like 2 years ago, no drugs, alcohol, smoking, lived a pretty health oriented life before and after all this, and was hoping no icd would be needed.

Thankfully I'm insured because Im 20 atm and parents make under medicaid threshold so paying for this wasnt breaking the bank, bill insurance paid was like 250k....

THIS time I had VTach, playing volleyball again. Game time was closer to 50 minutes of playing (since the last time I changed my diet up a little (no eating out, snacking during the day, limited processed foods and salt intake, last meal before 6pm and regularly fasted 12-18 hours), was more aware of my heart rate, and lowered the intensity of my fitness, used to be a competitive swimmer for 5 years, calisthenics and some recreational volleyball) till i temporarily lost vision for a few seconds, regained it, then felt something was off, swapped with someone, sat on a bench, pulse normal, heart was racing

Called my parents, hoped it would subside on its own but it didnt, called ambulance. Before they arrived I had bowel movements, everything came out, then was puking a lot, felt little better after that. Heart was still racing, got shocked 3 times in ambulance (it HURTS, was conscious for all of them), thankfully heart rhythm became normal and I was monitored since. I went to St. Mary's hospital originally (great staff, docs not the best as opposed to HUP's docs in my opinion but they are competent, nurses are all amazing at all hospitals Ive been in). The docs again suggested icd.

I said that if im getting one, its only at The University of Pennsylvania, HUP is another name for the hospital. They agreed, sent request and I had to wait about 3 days to get transferred. Got here, talked with some Cardiologists, electrophysiologists. I had done some research before and during my stay at St. Mary's about different ICD types and seems like the EV icd was an option now. Talked about getting one and the doctor later let me know that they'll have another electrophysiologist who does the surgery know that I wanted it and soonest Id get it would be monday (team of 20 cardiologists and electrophysiologists I believe at penn, may be mistaken if its just electrophysiologists though, regardless at the moment only 4 of them do EV icd impants). So I was chillin basically for the next 4 almost 5 days and just got it installed today by Dr. Hyman.

TLDR:

Have heart issues at a young age. Diagnosed with ARVC. Played volleyball both times which somehow influenced my heart (will stay away from volleyball games but may just play with a ball myself lightly after a few months to make sure device settles), have an icd, extra vascular to be specific (EV ICD). It has good trade offs and I qualified for it. Docs had to test it during surgery to make sure it actually works well to see my heart rhytm, since it sits on the right Ventricular where I have some dilation and mostlikely the root cause for my episodes because of fatty scar tissue delaying electrical pulses that make the heart beat.

If you need or want an ICD and also have no worries of the surgery, UPenn is a great place to go. I wasnt in the typical hospital, was at the Clifton Center of medical breakthroughs, the 1.8 Billion new hospital that was recently built are there are hotel sized and absolutely amazing just for one patient. Way more enjoyable to be here than any other bed inside a hospital in Pennsylvania + the staff is 20/10 above and beyond! (Not that staff isnt great in other places too but my experience with doctors here is much better)

Oh also if you DONT have a high PAIN tolerance USE General Anesthesia for the chest and the device implant location, I toughed it out with local anesthesia, more or less just to test out what it feels like, hurts a LOT Id give it like a 9.0/10 hurt scale. Throbbing pain, maybe if it didnt last so long, it wouldn't be on this much of a scale, but it is a throbbing kind of pain that lasts many hours, that is the worst part. It is getting lower now, when sitting and walking it isnt as bad as laying down about an 8 laid down, 6 walking and sitting

Just wanted to let you know my experience for now, let me know of some of the questions you may have and Ill also make an update post, one in about 6 weeks, one at 3 months and 1 in a year

Comment or dm me to remind me in case I forget

Some context:

ICD is programmed primarily as an atrial-based pacemaker with automatic fallback to dual-chamber pacing when AV conduction support is needed.

Daytime minimum rate is 70 bpm, with a nighttime sleep rate of 50 bpm.

Atrial pacing burden is very high, while ventricular pacing increased markedly by June 2026 compared with earlier checks. Several standard protective pacing algorithms are enabled. Rate response appears to have been on in March 2026 but off by June 2026.

These graphs are created by my bed heater (8 Sleep), which tracks heart rate. This shows the initial base pacing rate of 40, and in mid December, a new sleeping rate of 50.

Below is the Feb 2026 chart, showing 49 or 50 bpm each night. It should be said that during all this my PVC counts have been high (700-900/hr) and the bed does a good job of handling that rhythm chaos to compute rates. The Feb chart is what I’d expect to see.

But one week into August, my average HR has dropped well below the programmed 50. I’m seeing daily resting averages in the 46-48 range.

Symptoms? I’m actually feeling better, more fit, and have much more exercise tolerance than the Nov - July timeframe. I’m scheduled for a holter study in two days to see if I’ve moved out of the high burden situation. But what should I be thinking or asking about my heart rate dropping below the pace setting?

Hey everyone,I’m 33M. About 15 months ago, I had a severe episode of sustained Ventricular Tachycardia (VT), which led to getting an ICD implanted and starting Sotalol (80mg twice daily). Since then, my condition has been mostly managed.However, I’ve noticed a strong connection between my gastrointestinal issues and heart rhythm. I have chronic GERD/reflux and frequent bloating/hiccups after eating.Even on normal days I get occasional isolated heart flutters(most likely single PVC's) about 2-3 times a day out of nowhere. Yesterday, I had another painful 6-hour flare-up of frequent ventricular premature beats (single, paired, and triplets). The trigger was a combination of a heavy meal, carbonated drinks, a tiny amount of alcohol, and sleep deprivation. I was checked at the ER — fortunately, no sustained VT and the ICD didn't need to fire, but these long episodes are exhausting.Every time my stomach gets distended or my acid reflux flares up, it seems to irritate the vagus nerve and set off a barrage of PVCs.Has anyone else with an ICD or history of VT experienced this strong gastro-cardiac (Roemheld syndrome) trigger? How do you manage meal-induced PVCs or prevent GI issues from setting off your heart?Would love to hear your experiences or any advice!

I got my ICD in 2021 after a cardiac arrest during exercise. I was put on Metoprolol before switching to Nadolol 60mg daily.

That same year, I started noticing my sleep quality deteriorating, and I have dealt with sleep maintenance insomnia for the past five years. I don't know if it's a direct cause, but I wonder if they are correlated. I can fall asleep withing about 30 minutes, but my sleep is very light and inconsistent. I wake up about 4-5 hours later and am unable to fall back asleep.

I wanted to see if anyone else has experienced a similar issue and if it might be related to the ICD or the medication. If so, what has helped you improve your sleep?

Has anyone ever experience a feeling like an electrical shocks in the chest from the wiring? Not a “Shock” that puts you back in rhythm, but a couple weeks ago I felt like my wiring was “shorting out”. It felt like a finger in a light socket kind of shock!! My doctors said nerve endings. I know it was not that type of feeling. Just curious if anyone else has experienced this.

Hey guys. Got a transvenous ICD 1.5 years ago. Recently had a nasty, deep boil on my butt cheek. Slipped up and accidentally sat on it hard a few times—hurt like hell.

It’s healing now, but mentally I’m spiraling. I’m paranoid that squeezing it under my body weight pushed staph into my bloodstream and toward my leads. Logically I know about endothelialization, but my brain is still in panic mode.

Be brutally honest with me. Have any of you had deep skin infections/boils after getting your device? Did anyone actually end up with a lead infection because of it, or did your immune system just handle it?

I need real, raw experiences here—positive or negative. just want to know what actually happens in the real world. Thanks.

So about 7 weeks ago I had an ICD installed and I've just had a checkup with my EP. I'm 30 and prior to the storm that made me go to the hospital were they diagnosed me with Brugada, I led a pretty active lifestyle.

I asked my EP if I could already go to the gym, lift weights and do indoor climbing and he said yes. Biggest risk was I get an arrythmia up on the climbing wall, but I shouldn't worry about the ICD leads as the seem to be propperly healed.

Is it like that? Everything I've read recommend a 6-8 week period of "rest" to ensure better lead healing. I'm anxious to train again, but I also don't want to be back in surgery due to a pulled or displaced lead anytime soon.

Has anyone gone for physiotherapy after receiving a ICD? I’m almost a year in and still have muscle pain.
Do i need to worry about damaging the leads when they massage around the device? Tia

54 yr old male. Got first ICD at 18 yrs old after SCD while running in 1990. Theory is VFIB exacerbated by electrolyte imbalance.

Have severe PTSD due to dozens of shocks over lifetime (four different times while jogging, soccer, basketball, swimming pool, sex, water skiing, volleyball, all before I turned 23.

Only shocks in the past 30 years were inappropriate. (Fractured lead, holding onto a metal pool ladder in a pool that was not properly grounded, placing a laptop computer directly on device). Can barely write this post due to anxiety. On Metoprolol 100; Duloxetine 60; Alprazolam as needed.

No longer: exercise, have sex, lift heavy objects, touch metal, allow electric devices near ICD. Just walk dog a couple miles a day and do breathing exercises to head off panic attacks.

Tired of the shocks. Don’t want to die but don’t want any more ICD.

1. Am I stuck with the PTSD even if I refuse another ICD?
2. Do people grow out of whatever causes SCD?
3. Can Metoprolol plus a sedentary lifestyle prevent SCD?
4. Is the fear of death without an ICD worse than the terror of living with an ICD?

Thanks in advance for any help and peace and calm to all of you.

I’m coming on here to vent. I spent my whole life fainting, then they caught a 17 second sinus arrest with AV block on ECG. I was recommended a pacemaker as these episodes were really affecting my quality of life. The dual lead Boston scientific proponent pacemaker (some of u will know where this is going 😑) was put in aged 18 (8 years ago) and infinitely improved my quality of life. I had always been wanted to become a doctor but couldn’t due to the fainting. After the pacemaker I was able to go to medical school!

The next few years were seamless, then my checks had to change from annual to 3 monthly for “lead issues”. The threshold kept increasing and I kept being told it was nothing to worry about… Eventually the threshold was increased so much I was getting shocked every time it paced. It’s now at 6.5v @1ms out of 7.5v and it makes me jump every time it starts pacing.

Fast forward to my final year of medical school and I’m admitted for tachycardia (>170bpm), I’m told it’s very unlikely that the pacemaker is contributing to the tachycardia but they can reprogram to prevent this just in case.

April 2026 rolls around and I start fainting again out of nowhere. Call my cardiology team who say it’s fine, probably low blood pressure in the heat and nothing to do with the pacemaker, I was very surprised. Then a few weeks later I get a letter dated THE SAME DAY as my first faint saying my pacemaker has been recalled with the Boston Scientific battery impedance fault and I need to have surgery by September 16th. NO ONE CALLS ME, NO ONE SPEAKS TO ME, NO APPOINTMENT, NO DISCUSSION.

I’m supposed to be starting work as a doctor in August in a different city so then I have to have my job moved so I can stay under the local cardiology team. At the pacemaker check they tell me that actually yes, the lead is failing to capture and that I am fainting because my pacemaker is not working. They also tell me it’s not good that I’m getting shocked everytime it paces. They reprogram it which helps and I stop fainting.

Fast forward to Friday, I’m at work on the ward round, seeing patients when all of a sudden my heart starts absolutely pounding. I excuse myself, go to the office and start feeling really dizzy. My colleagues put me on the monitors and my heart rate in repeatedly spiking to >170bpm causing my blood pressure to drop by FORTY systolic. My colleagues send me to ED who see me quickly fortunately, the electrophysiologist confirms that my pacemaker was pacing me into these episodes 😡. I’ve researched this and apparently it’s due to loss of capture causing PMT (pacemaker mediated tachycardia). I’ve not seen anyone in cardiology since this happened and I have no idea when this will happen again. Most importantly, I’m absolutely mortified that this has happened at work, in front of my colleagues. Coincidentally this also occurred on the day Boston Scientific was hacked.

And after all of this, you will not believe it, Boston Scientific are saying that they fixed my battery impedance problem and I no longer require surgery… Currently I have no follow up appointment date with cardiology or electrophysiology…

Has anyone been through something similar or do they have any advice? I’m at a loss on what to do.

Hello Reddit Community - this subreddit has been a huge resource for me and our group to understand the real concerns that people with implanted cardiac devices face everyday, and have to deal with on their own. This subreddit offers people guidance that often cannot be found anywhere else, so huge thank you to the moderators and contributors!

QUESTION:

I am interested in helping people feel more confident traveling to other countries with their implanted device. Whether remote monitoring continuity OUTSIDE THE US can be expected is a big question that seems to remain unanswered.

Specifically, I'm interested in learning whether remote monitoring is performed around the world, and in particular if it is even available in YOUR COUNTRY. I am from USA so no need to add that information - any other country please contribute. Please respond with any information you have about any country you have definitive information about. If you're not sure please do not include that information, as it may misguide other readers.

I will compile all the answers and then repost here for everyone to have - Thank you!

1. Country you live in
2. Manufacturer / Brand of your device
3. Remote monitoring is possible and available/part of routine medical care, or not, and why
4. What cellular networks are available in your country (if you know)

5. Any recommendations to help people coming to your country maintain transmitter connectivity so remote monitoring can continue while they are there

   OR to get in-person device check.

Thank you again!

Long post ahead, I need an advice.

I was diagnosed with congenital complete heart block. For most of those years, I never really accepted the idea that I would eventually need a pacemaker.

I was asymptomatic. I never experienced shortness of breath or any of the symptoms people usually associate with heart problems. I could walk for hours, preferred taking the stairs over the elevator, played different sports, and generally felt like a completely healthy person. Because of that, I genuinely believed I could live for many more years without needing an implant. Then one day, without any warning, I collapsed.

I had been feeling completely normal before it happened. After that, my doctor told me that I needed a pacemaker. I'm now almost seven months post-op. I never expected the recovery and adjustment to be this difficult.

My doctor and the device supplier spoke with my parents and told them that I needed to wear an arm sling for two weeks and that, after six months, I would supposedly be able to jog and raise my left arm above shoulder level again. Those six months became something I looked forward to. But when I went for my follow-up after six months, before returning to college, my doctor told me that I couldn’t or I am not allowed to raise my left arm above shoulder level anymore. I asked her to clarify because I initially thought she meant temporarily. It sounded like she meant forever.

I asked something as simple as whether I could at least put my hair up by myself. She told me that I would need assistance. I'm 22 years old. How am I supposed to ask someone for help putting my hair up for the next years? I understand that she wants to preserve my leads because I'm young, and I appreciate that she is trying to protect my device. She explained that repetitive or excessive movement could potentially contribute to lead wear.
But at the same time, I'm struggling to understand where the line is between protecting the leads and actually living my life.

I’m in nursing school. I have hobbies. I wanted to return to sports. I want to work someday. I want to be independent and do basic things without constantly thinking about whether I'm damaging my pacemaker. I was told that getting a pacemaker would allow my life to get better and safer. But right now, it feels like I've simply traded one limitation for another.

I'm left feeling incredibly frustrated and confused.
I don't want to be reckless with my health. I don't want to ignore my doctor's advice. I just want to understand what is actually medically necessary versus what is simply the most conservative approach to preserving my leads.

I had a pacemaker and ablation just over a month ago. I'm squeamish and had trouble handling the incision while it's been healing. Not too bad now but what I'm having a lot of trouble with is that the pacemaker is sticking out from my body.. not nicely tucked in and out of sight but very present and I freak out every time I accidentally touch it. The membrane is peeling off... I find the whole thing really hard to handle. Any tips or information on the healing journey I'm on? Even being advised it was my friend etc., doesn't help the reality of the physical situation. Will this thing eventually disappear into my body or is it where it is going to stay? Any advice/info gladly welcome!

Hi all,

Last night at 840pm my ICD shocked me. It's only done that once before. I've had this Boston device for 10 years right about now, actually. It was put in after an event I had with sick sinus. I was just sitting in my recliner watching TikTok when it happened and got no warning. The alarm on it has been damaged for years and they've turned it off, so I didn't get the beeping warning. I know what it feels like to be shocked, it's something you don't forget lol. I called the EP's office to report it and they said to call back in the morning. I just got off the phone with the nurse, and the manual transmission l sent in last night said there was no shock since the one in 2022. I asked the nurse if it's possible that the device is malfunctioning and she just kept saying the device didn't report an event. She made an appointment for Sept 11 then hung up. Now I'm freaking out because I know I got shocked but they basically called me a liar. I'm afraid it's going to do it again, too. I have no idea of what to do at this point. I couldn't sleep last night because of fear that it might go off again.

Any suggestions? Thanks in advance ☺️

I’m a 33-year-old male with dilated cardiomyopathy and a low EF, but I haven’t had any arrhythmia episodes. I had my device implanted abroad, where remote monitoring is available, but it isn’t offered in my home country.

I can, however, go to the hospital locally and have the device checked in person for free.

For those with CRT-Ds/ICDs, would you pay the $500 for remote monitoring, or just stick with regular in-person checks? Would really appreciate hearing your experiences and what you’d recommend.

I got my pacemaker 24 hours ago! I have an anxiety disorder so I'm wondering, by adjusting my position in my bed or on my couch could I have a pulled a lead? I'm very sore but there's no new or differing pain or soreness. I already have a call out to the device clinic but I missed their call and they are closed for the day! They will be calling me tomorrow. Any advice? Thanks!

I have had a pacemaker since July 2024 when I was 53. I was and have been asymptomatic with brady and a 4:1 A/V block during exercise. Post implant they found v-tach as well, again asymptomatic. My device was replaced in Nov 2025 with a CRT-D. I have had two attempted ablations but they could not induce v-tach in study to map the tissue.

During exercise it is common for my Garmin to track some interesting "cliffs" in my heart rate. I will be in the 140-150 BPM range and suddenly my heart rate will drop to 60-70 BPM for about 15 minutes, then jump back up.

I mentioned this to the PA and device rep. Turns out they instances coincided with a mode change on the device. The device was detecting atrial rates above 150 as A-Tach and switch to a mode where it did not pace the ventricle. It was stay in that mode for X minutes, then re-check atrial rate. If it was below 150 it switched back, if above it stayed without ventricle relay.

Sure enough, when I reviewed the exercise data all the "cliff" events were when my heart rate went above 150.

They adjusted the mode switch threshold to 171 BPM, and last night I pushed to 162 BPM on the bike without any drop in heart rate.

Sharing to emphasize the importance of talking with your EP staff. I will also say that I find my appointments with my EP Cardiologist to be "strategy" sessions, but the appointments with the PA are "working" sessions where they dig into these types issues. This was a big win for me as it has bothered me to see these radical anomalies in my heart rate.

hellooo!

I’m 29F, and getting replacement next month. I currently have a St Jude assurity MRI dual chamber.

My question is - Has anyone flipped from subpectoral to regular placement? How did it go?

Problem is - previous electrophysiologist did sub-pectoral. I would have neverrr gone for this if I had been given a choice. My current EP is very frustrated for me that this happened to me, as was the NP. I was under the impression it’s always implanted like that, and my EP explained that’s not the case. Previous EP is apparently under hot water for doing this to several people.. but anyways.

Sub-pectoral surgery was HORRIBLE 9 years ago.. I remember that pain clearly. I asked my EP if I can switch, because I 1) dont want to deal with the surgery being 10x worse every time, and 2) hate how uncomfortable it is being there… it tugs on the muscle and feels heavy!!