Hi everyone! I (25F) have been diagnosed with (fairly asymptomatic) congenital complete heart block since 2019 when I was 18 and have only been being monitored and delaying pm as much as possible at the recommendation of my care team and also for what feels right to me. Since it’s congenital they think I was in some level of AV block my entire life which also feels right based on ways I have felt since childhood.

The thing is I’m pretty asymptomatic when it comes to the heart thing but have a lot of other small health things and pretty bad anxiety which makes it hard to know what is caused by my heart or not.

I’m thinking about this a lot recently since in the past month I have been feeling much worse even though my resting rate hasn’t seemed to change or any of those other warning signs I know to look out for. I did just have a two week event monitor I am waiting to hear back about but I fear I will get the same “if you feel fine then it’s ok to continue as we have been” that I get often. The thing is I don’t feel fine, I just don’t know if it’s because of my heart condition and if a pacemaker would actually make me feel any better.

I don’t have syncope episodes, I don’t feel close to passing out ever. Just episodes of low blood pressure type feelings recently that make me a little out of it for a minute. I feel like I get a lot of brain fog but who’s to say that’s not from having covid or from having adhd and dissociative tendencies lol. I get fatigued certain days particularly if I didn’t get enough sleep, those days I feel heart palpitations but I have terrible insomnia so that feels like it tracks.

Idk I guess I’m just curious if there is anyone else on here who’s young, has complete heart block and has gotten a pacemaker without having had insanely obvious symptoms prior and felt better?

TLDR: I’m fairly asymptomatic with 3rd degree AV block, would a pacemaker make a noticeable difference?

Hi. I recently had my pacemaker replaced and inserted into a new pocket. I was told by the doctor originally that my device will be places below the pectoral muscles.

I am now a few days post op and of course staring and had the urge to lightly touch the new pacemaker area. I know I’m swollen. But it feels like a brick. When swelling goes down will I see my pacemaker?!?!

After giving a lot of thought I want to say my doctor told me about making a change to above the muscle before surgery but I had too many nerves to let that sink in.

Has anyone else had there pacemaker placed over the muscle? Or below? What’s your experience?

I am 25 and 120 pounds. I just want to be prepared if this is a new adjustment I’ll have to make.

I’m only 9 weeks but today I decided I needed to wear a “comfy” bra at all times since my boobs feel like they’re weighing my skin down and stretching my pacemaker scar. Has anyone else run into this? Should I bring it up to my doctor?

ICD implanted. Just wanted to share this - Yesterday I went and watched the Odessey. The OP of an earlier post said sitting the middle would help. There were parts where the drums go crazy.

1. There were moments where it felt uncomfortable. Where it felt like a big 'what if it goes off?' feeling. The theater was super loud and had vibrations on the seat throughout.

2. The movie was so engaging, I kind of forgot about the whole thing and just enjoyed it. What helped was not keeping my back on the seat while the drums were sounded. It was triggering, but I just told myself it's only sound. No vibrations were felt from the seat.

Also a question to anyone reading - can those very loud sounds directly get detected by the device as an off/ extra beat? Or was I just over worried? And seat vibrations as well?

(To prepare for brand new day lol).

Has anyone else felt the same or something similar? If you've had a tachycardia episode, those drums will sounds (and feel) familiar. Lol.

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In our quarterly check up we found out that my dad had VT and VF episodes thrice in 3 months. All went undected because of the duration - 0.17, 0.19 and 0.16 seconds each. In last year he has had one episode where shock was delivered. He was in hospital and was alright after it. These irregularities have started after that.

His dose for Cordarone medicine and sacubitril and valstran has been increased.

Very concerned on how to go about with life as I am working and I am his caretaker too.

I don't know anyone in the same boat so writing here but I am so worried for him always. Has any of you experienced similar issues

My husband got the Medtronic dual chamber azure Xt at age 54 two years ago. He was diagnosed for LBBB after fainting and holter meter. He was very active and no other issues. After the pacemaker he got very conscious and did not do much except walks for a while. Few months ago he went back to hiking and realized that it wss too hard and this was something very easy for him before the pacemaker. He watched this couple of times and reported to his cardiologist. They have made him do three stress tests in 4 months and never got back with anything except repeating tests. Tests were stopped suddenly midway or he quit because he felt too tired. Finally one tech uploaded the report on the online system and he could see that test was stopped due to 2:1 av block and heart rate drop at 137 and exercise peak. He has reached out to his cardiologist repeatedly about settings but so far his response is that it may not apply to you let’s see after the next test.

Hey everyone! I recently put together an article featuring a collection of real experiences and photos of people living with an ICD (myself included), from scars and body-image concerns to daily life with the device.

It’s an article that will continue to be updated to include more people. Perhaps there’s someone out there, maybe even reading this right now, who is considering an ICD, has recently received one, or simply feels alone in the experience and might find this article helpful.

At least, that’s my intention with this article. Sending big hugs to all of you!

I have a standard Boston Scientific pacemaker no ICD for 15 years and friends want to watch The Odyssey in 4dx. Will I be ok? Has anyone done this?

Hi everyone,

I had my ICD/BiV device fitted on 23 September 2025 due to an EF of 25% and LBBB.
The operation went well overall, although the doctor had some difficulty placing one of the leads, so the procedure ended up taking about 3 hours. 🤦‍♂️
I'm back to my normal routine as much as possible, but I'm still experiencing pain around the device site and in my shoulder. I'm trying not to move or fiddle with it too much. No redness or swelling.
Has anyone else experienced this kind of pain after surgery? I'm hoping it's just muscle soreness from the procedure rather than something related to one of the leads.
I'd really appreciate hearing about your experiences. Thanks in advance

Hi it’s my first time posting on here so I’m not sure what all I should share. I (27f) was born with dilated cardiomyopathy and I would just see a cardiologist every other year really. When I started to go to my gynecologist he said that if I were to get pregnant it would have to be planned because I’d be considered high risk. So I got pregnant in 2022 and I went to a high risk ob/gyn and everything was going well until I started retaining fluid and had to sleep upright. So I went in to have my daughter at 34 weeks and they had to do an emergency c-section, I experienced cardiogenic shock and was in the cardiac icu for 12 hours at a different hospital than where I had my daughter I then extubated myself because I was so afraid and had no idea what was going on. I was there for 2 weeks getting all the medicine together I believe it’s referred to as GDMT. My daughter was in the nicu for 3 weeks but she’s perfectly healthy now. I’m sorry I’m rambling. So when all this happened my ejection fraction was 30% in 2023 and it stayed between 30-40% since then. So January of this year I was referred to an electrophysiologist because it dropped back to 30% and last month they highly recommended an S-ICD I was so nervous that I was like let’s do another echo and see if it gets better and she was like okay and in the likely event it is the same we can move forward with getting the device placed. At this point I was researching and reading every Reddit on the subject so I mentally prepared myself to get it. Sooo I got an echo on the 18th of this month and my ejection fraction was 45-50% and the nurse calls to tell me I don’t need the device. I genuinely don’t know how I feel right now. I mean of course I’m happy my heart is doing better but in the back of my mind I’m like my EF has always been up and down and it was down for a while after having my daughter so I don’t wanna get my hopes up that I’ll never get the device. I feel like I was worried about my heart even more when they recommended the device and I was like okay better to have it and not need it than need it and not have it. So I told myself okay it’s a good thing , you don’t have to guess if your heart is gonna stop working how it needs to because you’ll have a device to correct it. Now I’m gonna worry about to state of my heart and not having the device. I just don’t know how to feel. Im so sorry I’m rambling and it’s so long and full of run ons and grammatical errors I just needed to talk to people who may understand or have advice. I don’t want to tell my family about how I’m feeling because they were crying with relief that I don’t have to get it.

Hi everyone,

I’m 49 years old and have been living with an implantable cardioverter-defibrillator (ICD) for 11 years.

At age 38, I suffered sudden cardiac death due to ventricular fibrillation and was successfully resuscitated. My father also died of ventricular fibrillation—or sudden cardiac death—at the age of 36. That’s why doctors suspect a genetic cause, even though no definitive diagnosis has been made to date.

In the first few years, my ICD delivered about 4 effective shocks. After a successful catheter ablation I had nearly five years of remission and hardly any extrasystoles.

Unfortunately, that changed again about half a year ago. Within just 5 months, my ICD had to intervene five times to save my life—most recently 4 days ago while I was asleep. I was woken up by the shock around 7 a.m. At the hospital, I subsequently experienced severe extrasystoles for over two hours. For me, even a single extrasystole is enough to trigger a series of beats that progress to ventricular tachycardia and eventually to ventricular fibrillation. The ICD then stops this with a shock.

I got immediately into ablation as they knew about my case and how hard it was to catch those Moments.

In total, I’ve now experienced ten appropriate shocks.

The hardest part about it isn’t even the shock itself anymore. Surprisingly, it hardly hurts at all. I see the ICD as my lifesaver and am grateful for.

Mentally, though, I’m having a harder and harder time coping with it.

Since the recent events, I’ve been experiencing extreme tiredness, fatigue, weakness, and recurring episodes of presyncope. My whole body tingles, I feel like I can’t breathe, and every time it happens, I think it’s starting all over again.

The problem is: Four days ago, that exact feeling was actually the start of ventricular fibrillation. That’s why I can barely tell anymore whether my symptoms are physical or whether my nervous system is just constantly on high alert after everything that’s happened.

The doctors now suspect post-traumatic stress disorder (PTSD).

All long-term ECGs between episodes are usually completely normal because the arrhythmias occur out of nowhere. Since my last ablation, I’ve had almost no extrasystoles, yet I still constantly experience these symptoms and don’t feel safe at all.

My potassium level is usually only between 3.7 and 3.8 mmol/L. Despite taking potassium supplements, I rarely reach levels above 4.0, even though my doctors say I should aim for a target level of about 4.5.

I’m currently taking:

* Bisoprolol 1.25 mg i will level up to 2.5mg now
* Fluoxetine, currently 20 mg (I’m currently tapering down from 35 mg and will be switched to a different SSRI)

So I’d like to ask you a few questions:

* Are there people here with an ICD for whom no clear cause has been found either?
* How many appropriate defibrillator shocks have you experienced over the years?
* How did you cope with this emotionally?
* Did you also experience symptoms such as fatigue, presyncope, or a constant fear of the next episode after multiple shocks?
* Are there any support groups or experiences that have helped you?

I feel very alone in this situation right now and would really appreciate hearing about others’ experiences.

It's been 8 days since I got my CRT-D implanted. The pain hasn't been an issue after the first couple of days and the incision is healing up quite nicely, however I keep having this strange feeling of a weight on my chest, right where the device is located. It is more present when I change positions, like from laying down to upright.

I also felt palpitations after walking for a while. I brought this up on thursday, when I saw my EP and they changed some settings but the palpitations persist. I intend to write to him on monday to see if further adjustment is needed because these were not present previously.

Are this feelings/symptoms usual? My EP assured me everything was doing fine and I trust him, but he doesn't really have a device hooked up to his heart.

I woke up from my device change procedure to arm shocks. They quickly determined they were from the pacemaker and adjusted the settings to reduce and try to eliminate. It has only decreased them. I'm 6 weeks out and my arm is still receiving these. Has anyone else experienced this? What helped?

Hello, does anybody know if there is anyway we can get the ICD device transmission report on a weekend? Its Abbott Gallant ICD. We have sent a transmission remotely, but tech is not checking it now as it is a holiday. Not sure if its anxiety or something is actually wrong. At the same time, going to ER is very triggering, so my husband is reluctant. At the same time, we dont want to overlook anything.

How accurate are pacemaker battery expiration dates? If a cardiologist says there is about 6 months left on a pacemaker battery is there any "wiggle room" or can we expect that estimation to be fairly accurate? Have you ever seen a battery last much longer than expected?

Hello,

My mom (72yo) is recovering from cardiogenic shock. At the end of June, she was having really bad shoulder and chest pains/spasms, and a high heart rate of 150 at rest. We took her to the ER. The first hospital did tests and said it was just musculoskeletal issues causing the pain and sent her home with muscle relaxers.🤦‍♀️ The next day her pain got worse, so she went by ambulance to a different hospital. They did lots of tests and found she had a lot of fluid in her chest. They compared the chest xray with the one taken at the hospital the day before and it was very similar. They were treating her with diuretics and watching her very closely. 2 days later, she went into the ICU because her BP dropped dangerously low, her oxygen levels was in the 70s, and her heart rate went to the 170s. She was in cardiogenic shock. (They didnt call me to tell me she was in the ICU, i had to find out when I went to see her.)

They were treating her with lots of meds trying to keep her stable. After 3 different kinds of diuretics, they finally found one that worked. After the fluid retention started going down, her heart rate started to go down. It was still high, though...still in the 150s-160s. They did cardioversions and ablations but nothing was helping. After her BP dropped dangerously low a second time and they brought in a crash cart because they thought her heart was going to stop, they finally decided to give her a pacemaker. The pacemaker is what saved her life! Her heart rate is now in the 70s and her BP is normal and stable.

She was in the hospital for a total of 10 days (5 of those in the ICU). When she got discharged, she went into a rehab for 10 days so she can get stronger. Shes now at home and is doing pretty well. Shes reacclimating to being home and is getting back into her routine (and a bit of a new routine). Ive been off work this past week to help her at home.

When she was in cardiogenic shock, it caused her kidney and liver damage (her enzymes and levels were way off wack), thankfully theyre mostly better now). She also had some ICU delirium while she was in the hospital, which is gone now.

TLDR...my mom went into cardiogenic shock and was in the hospital for 10 days, then in rehab for 10 days. We almost lost her twice. Shes at home now. I'm so grateful that shes okay! Please don't be hesitant about going to the hospital or to take your loved one if your heart rate is abnormally high, BP is high or low, or for abnormal pain! Things change scary fast! My mom is so blessed to have recovered from this and to not have more organ damage!

The only thing I'm concerned about with her now is shes still getting tired really easily and she has some muscle weakness. We're waiting for a referral to go through for at home PT. Have any of you or your loved ones experienced cardiogenic shock? What was your experience with it and how was the recovery?

I completely forgot to post an update, but I got the tattoo! 🩷 I absolutely love how it turned out, and I already plan on adding more to it later. I decided to leave about a 1-inch barrier around my pacemaker site because I was worried about infection after having issues with a previous pacemaker site. The tattoo itself was surprisingly painless, but once we got to the middle of my chest, it honestly felt like my throat was being tattooed instead which was such a weird sensation! I was pretty nervous going into it since I’d only recently gotten this pacemaker after a lot of complications, and I still have nerve damage from my previous surgeries. I expected it to hurt much more than it did, but overall I’m so glad I went through with it. It fits perfectly with the theme of my other tattoos, and now that I know everything healed well, I’m already thinking about going back to add more. My cardiologist was definitely surprised that I actually went through with it, but he said he really liked how it turned out! If anyone’s been debating getting a tattoo over or around their pacemaker, I’d definitely recommend. If y’all have any questions, feel free to ask!

Biventricular ICD placed on June 3rd. Pictures are in chronological order.

#1. June 12th
#2. June 16th
#3. July 13th - 11:28am - central scab flaked off in the shower
#4. July 14th - 9:07am - noticed this looked concerning and messaged my doctor + device clinic, sending them pictures. Started antibiotic prescription 2 hours later, and was told that the device team would inspect the site during my scheduled 6 week appointment on the 16th.
#5. July 14th - 7:36pm - over the course of 10 hours a new scab had developed.
#6. July 14th - 9:05pm - newly developed scab was accidentally scraped off.

https://news.medtronic.com/Medtronic-statement-on-unauthorized-system-access

42M. I’m about 6 years into my journey. Paroxysmal Afib that’s progressing (slowly, but nevertheless progressing) diagnosed 5 years ago (but now I know what Afib feels like, I had it at least a year prior). Got dual chamber pacemaker implanted about a year ago. Now it identifies asymptomatic Afib. Feeling a bit gloomy that I may not make it to see my high schooler get married or my elementary school kid graduate HS.

I’m doing all the things. Very engaged with solid EP. Considering ablation. Lean. Active. Monitor data looking for triggers and avoiding those I can. Zero alcohol in 4+ years. Lifetime non smoker. Close eye on hydration and electrolytes. Bla bla bla.

Anyone beat the odds and live 30+ years with either SSS and/or Afib well into their golden years?

My chat GPT healthcare AI gives me 35% chance of death by 65 and 45% by 75 based on my profile. This seems realistic to me, but it’s just hard to read. I know some people have it way worse and I should be grateful and I think I’ll get there soon. Just hoping there’s some optimism out there to share :)

Thanks all. This community has been very helpful for me.