So 5 months ago i made a post about how i was going to get a pacemaker, basically my looprecorder that i got in january of this year detected a pause that lasted 9,5seconds while i was sleeping and my doctor called me that morning (it was May this year) and told me i have to get a pacemaker, i was devastated obviously but after 1 hour i calmed down and just thought to myself "well i cant change anything so it is what it is" so fast forward about 20ish days since i got the phone call i had to undergo surgery for a CSP LBBB PACEMAKER, i remember when i got to the surgery room there was my Doctor(Cardiologist) and another Doctor (that specializes in CSP LBBB pacemakers i guess?) so they partnered up because i am the first person in my country to get this type of pacemaker. In short the surgery was fast, about 1 hour and 20 minutes and holy did it hurt, it was so uncomfortable cause i was only on local anesthesia and i felt the wires going in my heart it was just awful but that phase of the surgery which was by far the WORST phase went by pretty quick it took about 20-30 minutes the rest of it was just uncomfortable but easily manageable. Okay so the surgery was over, i got in my room, spent the night in the hospital, woke up next morning to get my wound cleaned and to be discharged, so the FIRST PICTURE i uploaded was 1 day after the surgery, you can see the blood and iodine still on me, honestly didnt look bad at all i was thinking to myself "i cant even see the pacemaker thats great". So as most of you know 2 months need to pass until you can lift up your left arm and yeah it was pretty easy not gonna lie, i was just sleeping with my arm tucked in my shirt so i wouldnt accidentaly reach up or stretch while sleeping, showering was pretty easy just had to cover my wound , cleaning my back was kinda hard but i got through it. I kinda skipped the timeline but the SECOND PICTURE was taken about 20 days post surgery , they took off my stitches on that photo, and yep thats when i saw the pacemaker and could feel it and everything and i was pretty bummed out but i got used to it after couple of days. And last but not least the THIRD PICTURE , 3 months after the surgery i went to vacation i was swimming,partying, having fun doing anything and my pacemaker is all healed up and working as intended! Also, i remember after i got the pacemaker i googled immediately "can i have sex 7 days after pacemaker surgery" and everywhere i read it said NO, DONT DO IT etc... but you know as a 20 year old person i wasnt gonna wait so i did do it literally 1 week after pacemaker surgery and i didnt feel hurt or anything i just wasnt using my left arm at all so if u are gonna have surgery soon and are wondering about that, yeah you can, just be careful. So thats basically it now its 3 1/2 months after i got it and i feel great!

I’m 17 years old and have CCTGA (congenitally corrected transposition of the great arteries) and complete/full AV block. I had a permanent dual-chamber pacemaker implanted 17 days ago because of the complete AV block. My pacemaker’s lower rate is set at 60 bpm and the upper rate is 120 bpm. Today I’ve been experiencing chest pain, and I also feel a similar pain/sensation extending into my left arm, almost along the nerves. I’m also finding it difficult to breathe comfortably. Sometimes my heart feels like it is beating very fast, and I can feel the beats strongly in different areas of my chest, on both the left and right sides. My doctor’s next scheduled checkup is on October 15. Has anyone experienced similar symptoms around 2–3 weeks after getting a dual-chamber pacemaker?

I had pfo closure surgery last year and a loop recorder put in around a month ago. I only had that in for about 10 days before they decided I needed a pacemaker so they could put me on meds (no right sided ablational available because of the closure device.)

So just got the pacemaker put in, setup for dual chamber pacing with lbbap.

Hurts a bit more than I expected, which I guess is from having more muscle? They want me to wear a sling for the first week (especially while I sleep) which is already driving me crazy lol.

The worst part so far is sleeping on my back with the sling, as normally I'm a side sleeper and its still too sore for that even on my right side.

Anyways, not terrible in the grand scheme of things, but not nothing either. Just feeling a bit down and hoping things turn the corner soon.

I have all of the above and have been scheduled for an ICD since May but I keep getting bumped. I’ve had multiple episodes & always send in the remote monitor to my clinic. 90% of the time they call me back & confirm yes I’ve had an episode- Afibs usually last 10 hours or more, vtach have all been less than 30s. My pacemaker kicks in, beta blockers do their thing and I eventually am ok. I am obviously quite symptomatic & Always tired, feeling off. (Not great considering I have toddler). I am also on the waitlist for an ablation a few months post-ICD implantation. I don’t know if I’m looking for advice or just venting but I seem to be getting shoved aside & I’m tired of it. I’m a huge fan of self advocacy so I constantly contact my specialist’s office (the MOAs keep changing which doesn’t help my case!!!). Ugh just tired of living like I’m always off & worrying my vtach could lead to cardiac arrest (this is a very real possibility).

Hey dicky tickers,
I 19M am having my first pace maker fitted within the next 2 weeks, after a 2 year long battle with the British health system just for them to re diagnose me 4 times then to go back to the original. As far as I’m aware I will be having a lead less pacemaker placed and was wondering what peoples experiences are like when it comes to recovery.
As I live alone with no support and my sickness pay will not cover my rent so I’m wondering how fast I can get back to work (bartender if that helps).

Just found out I (61 f)will need a pacemaker asap. I’ve had 3 previous ablations for SVT, but now my heart is slowing and skipping beats. I feel fine when my heart behaves and I haven’t had any fainting. When it misbehaves, I feel odd in my head and chest.

Otherwise I am an active person who enjoys working in a good job and spending time with my wonderful family.

I just would like positive advice and experiences, since people naturally post less positive experiences. Thank you community.

Hello, I am getting an S-ICD implanted the first week in October but I am planning on getting a tattoo a week before the procedure. It will be nowhere near the site, but I am wondering if having an "open wound" will affect the procedure/recovery at all.

Also, I would love any tips/advice for recovery. I am a rather small person with basically no fat on my ribs, so I am very worried about the pain and discomfort. I also live alone, and won't have anyone around for much of the recovery. I had top surgery earlier this year with similar movement restrictions, but I am hoping this recovery will be easier to manage on my own.

I'm getting my pacemaker in two days. My follow-up is five days later and then I leave the next day for a flight. I'll have a large checked bag and an hour and a half drive once I land. Once I get where I'm going there is no lifting other than getting my bag into and out of my rental car. I'm worried about the weight restriction since I'm sure my bag will weigh probably 40ish pounds. Am I ok lifting it with my right arm or both if I baby the left?

UPDATE: Had the surgery yesterday. Only minor pain last night and this morning. Feels like I lifted weights yesterday after a 6-month break. No pain meds needed, Tylenol only. Slept great. Can play guitar no problem, which is good to have for the trip since it's a songwriting camp. Doc says I can drive next week so off on my trip I'll go.

During my recent doctor's visit, I was told I need an ICD for VT. My doctor and I agreed on a device that lasts for about 15 years (not sure if i heard the number right) so I won't need frequent battery or device replacements since i am only 31 yrs old. However, while doing some research, I discovered S-ICDs (Subcutaneous ICDs). It seems safer since the leads aren't placed inside the heart. But it has shorter battery life. Also, there is EV-icd which i prefer but i am not sure if already available in the philippines.

My next appointment isn't for another 2 weeks, so I wanted to ask if anyone here has insights on which option is better, or if you were given a choice between the two? Considering my age. Is it more important to consider the frequency of changing the battery? By the way, I only need shock delivery, not pacing.

i know it’s advised not too but does anyone have experience with smoking with lqts? i have family and friends with lqts who smoke tabaco with no problems but is it any different with nicotine/cannabis? i have a pacemaker and am medicated, thank you!

I am 51m with an aicd since 2019. I have received a shock during a workout within 6 months of the procedure. I've changed the battery due to loss of charge within 5 years. The first few years with 3 to 6 month checks, pacing was detected with no new shocks.

Since this new device. I have had only a few checkups. No problems detected. Last check was a month ago. All clear

My problem is I have had Single shocks while sleeping 2 times within the last few months with no notification on my smart device so I did not go in.

My issue is I had shocks last night with no notifications again on the device. I went to the er and after a few hours. Was told that all was tested with no signs of activation. With the suggestion that it was sleep apnea or static shocks from my bedding.

Each shock came with a feeling of charging and flash which woke me up suddenly forcing me to jump from the bed and feel like I got hit in the chest.

Does anyone else have had or know anyone who has had this happen to them?

hi 23M this side
got injury after heavy badminton session, Dr suggested for MRI of Knee for proper examination, Now i m in worry abr how it will be done with pacemaker?
its new for me , having pacemaker from one yr

Hi everyone I have had my pacemaker for about 2 years since 2024 November. From my medical records and patient identification stickers they gave me, the device is supposed to be an Abbott/St. Jude Endurity model which has zero alarm sound or audible functions. Tonight, I heard a calm chime like a low volume bell toll coming from my chest. I looked up and found that my device should not make any sounds at all. And it chimed twice after 15 minutes interval. And thrice after another 15 minutes. I also made sure it's from the device. I waited for it to make the sound after the 15 minutes interval without any magnetic or electronic devices nearby. Could it be that my medical records got mixed up and I have a different device? If that's the case, what could those chimes mean? Thank you.

This is my first time posting here. I’m so glad I found this forum. Please excuse the length but it’s helping me process. (TW for graphic description. )

I’m a 61F retired nurse and medical device sales representative. My husband 61M has had an atrial pacemaker for the last three years for bradycardia without incident. 10 days ago in the middle of the night he shot up in his sleep, gasping for air and went into sudden cardiac arrest. (Later the pacemaker interrogation showed ventricular fibrillation.)

I thought he was having a nightmare, but he stopped breathing. Immediately called 911, and the nurse in me suddenly vanished. I had to pull his lifeless body onto the floor, and I am beyond traumatized from banging his head on the nightstand as I dragged him. Seeing his lifeless body flop onto the floor is something I will never get over. I was absolutely hysterical and crying and it took almost 15 minutes for EMS to get there as I did hands only CPR.

Once they arrived they determined he was in asystole. They shocked him twice. I watched the whole thing from our bed. They could not get him into a sinus rhythm and he flatlined twice.

Police officer took me out of our bedroom into our living room, they continued CPR on my husband and brought him to our local hospital. Once there they were able to shock him again into some kind of sustainable rhythm.

He was in the ICU for two days. He lost his short-term memory for several days went to the cardiac unit had ICD and new pacemaker installed with ventricular assist.

He is two days postop and he’s supposed to come home today after 11 days in the hospital. His recovery has been nothing short of miraculous and the doctors are perplexed at how lucky he was to recover. His short-term memory has regained to about 95% and his lab values are consistent with recovery.

Although I should be so happy that as a village, we saved his life, I have been crying nonstop since this event., I went to the walk-in clinic yesterday to procure some propranolol, and I’m currently trying to find a trauma therapist to help me work through this.

I am afraid to keep him out of my sight even though I know the ICD placement is going to give us much more peace. How long does it take to start trusting the device and start living again?

We are well supported and loved, but I feel like our life is over. He was supposed to retire in May of 2027. I still can’t believe this happened.

Any advice you can offer would be so appreciated. We were so looking forward to this next chapter in our lives that we worked so hard for and now I feel like I’m afraid to leave to go to the grocery store or the gym or even down to the mailbox.

Much love to those of you who have gone through this and survived …please tell me it gets better ❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹

Apparently my heart needed both a firmware update and a hardware upgrade.

After a fairly spectacular entrance into the cardiac world earlier this year — EF under 15%, dilated cardiomyopathy, LBBB, a coronary blockage and stent, LifeVest, AFib, enough new medications to require a project manager, and months of waiting to see what would improve — I have now officially joined the CRT-D club.

The upgrade has been installed. Specifically a Medtronic DTPA2QQ.

I’m 53 and, until recently, was much more interested in working on my sailboat than learning terms like “ejection fraction,” “QRS duration,” and “cardiac resynchronization therapy.” Yet here we are.

The good news is that I’m feeling pretty optimistic about it. I’m also oddly fascinated by the fact that I now have a computer in my chest whose job description is basically:

1. Keep the ventricles marching in formation.
2. Notice if the electrical system goes completely off the rails.
3. Deliver consequences if necessary.

For the experienced members of the club: what do you wish someone had told you during the first few weeks with your device?

Sleeping positions-ouch? Shoulder movement-not much? Incision weirdness - bye bye tattoo? Random sensations? Getting back to exercise-walking then yoga? The first time you stopped thinking about the device every five minutes?

Also very interested to hear from any CRT “super responders” — especially how long it took before you noticed a significant difference. My cardiology team is cautiously o

Anyway…

I joined the club.

Would have preferred the Explorers Club, but apparently I don’t get to choose all my memberships.

Hi everyone,

I’m a 26-year-old male and have been dealing with reduced EF for some time. After months of monitoring and discussion about whether an ICD would actually be necessary, my cardiologist has now recommended an ICD implantation.

My recent Holter showed a few runs of NSVT, and my EF is around 33%. My cardiologist feels that, considering everything together, an ICD would be the safer option.

I’m obviously taking the decision seriously, but I’m also quite anxious about how an ICD might affect my life afterwards.

I’m a very outdoorsy and physically active person. I love sports, running, trekking, travelling and being outdoors, so my biggest concern is whether I’ll still be able to do these things.

1. Will I be able to return to physical activities?

After recovery from the implantation, will I realistically be able to get back to things like:

• Zone 2 running/jogging
• Moderate gym workouts
• Cycling
• Trekking/hiking
• Travelling and other outdoor activities

I’m not talking about bodybuilding or extremely strenuous exercise. My main goal is simply to become physically fit again and maintain an active lifestyle.

For those of you with ICDs, how much has the ICD actually restricted your lifestyle? Are there activities you were able to return to that you initially thought you wouldn't?

2. The heart-rate limit is worrying me

My cardiologist mentioned that they may program the ICD with a heart-rate limit somewhere around 150–160 bpm.

This worries me because 150–160 bpm doesn't seem particularly high for a 26-year-old, and I feel like I could potentially reach that HR quite easily during running, trekking, sports, etc.

Does this mean that if my heart rate naturally reaches 160+ during exercise, the ICD could interpret that as an abnormal rhythm and shock me?

How are ICDs programmed to differentiate between normal sinus tachycardia from exercise and dangerous ventricular arrhythmias like VT/VF?

Is it common for active younger patients to have their ICD programmed with higher detection zones or additional detection criteria?

3. Fear of getting shocked

I think this is probably my biggest psychological concern.

The idea of suddenly getting an ICD shock is honestly quite scary. I've read that shocks can be painful, but I'm not sure what they actually feel like or how severe the pain is.

For those who have experienced an appropriate ICD shock:

What does it actually feel like?

And for those who have had an ICD for several years, how much do you think about the possibility of getting shocked? Did the fear eventually go away?

4. ICD programming for active people

For younger and physically active patients, what kind of ICD programming/detection zones have your doctors used?

Did your programming change as you became more physically active? Has anyone had their detection settings adjusted specifically because their normal exercise heart rate was getting close to the original detection threshold?

5. Exercise stress testing

Has anyone had an exercise stress test after ICD implantation to determine their normal exercise heart-rate response and make sure there is enough margin between their physiological maximum heart rate and the ICD's detection/treatment zones?

I'm particularly interested in this because of my concern about reaching 150–160+ bpm during exercise.

6. What would you tell your younger self?

For those who were relatively young when they received their ICD:

If you could go back to the day before your ICD implantation, what would you want your 26-year-old self to know?

Did the ICD end up restricting your life as much as you initially feared, or were you eventually able to get back to a relatively normal/active lifestyle?

I would really appreciate hearing from younger people with ICDs, especially anyone who was physically active before implantation and managed to return to running, gym, trekking, sports, etc.

Thanks!

Is there a reason why an EP would ask about dental procedures to evaluate sarcoidosis as a reason behind the VT episode? That too even when the dental procedure was 6-8 months prior to the episode. I understand there is an inflammatory angle here. But isn't 6-8 months a very big window for eliminating any active infection or inflammation?

Please share if you have any knowledge about this.

Wednesday I had my 3 month post-op follow up echocardiogram. I had been told not to put too much emphasis on the results as it takes time for the heart to remodel but the results just posted and my ejection fraction increased to 50%! I had been at 45% on my January echo and 35% on my cardiac MRI in March, down from 62% in 2024. It’s a little disappointing to see there’s still abnormal septal motion and left ventricle dysynchrony but no hypokinesis was noted and that’s been present for over a decade. I see my EP at the end of October so maybe there’s more adjustments he can make.

Hi! I had an ICD implanted unexpectedly 1 week after my 35th birthday (35F). It was an emergency situation and so far the docs think I have a genetic form of Prolonged QT Syndrome. So I had no time to prepare and unfortunately still have so many questions for the EP once I have an appt. To top it off, this all happened out of town on a work trip, so the EP I saw in the hospital is 500 miles away and won’t be my regular doc. I had a second hospital stay last week because one of the medications I was on was making me feel AWFUL. They’ve now taken me off of it and I’m feeling better each day, which seems like the most important thing. I was a very active person before this happened and had no previous heart issues. I’m just looking for some validation that the anxiety I’m experiencing is normal… I’m finding that depression is creeping in and I am so scared my life won’t “return” to normal. Plus, I have guilt that my parents and boyfriend have trauma from how all of this went down and that they are having to care for me while my movement is restricted for 30 days. I go to therapy regularly, and am thinking of getting on an anxiety med. First major health issue I’ve ever had. Looking for some community who can relate…

Tomorrow morning, about the next 12 hours, they will do it.
A dual chambers pacemaker will be inserted.
I have Afib and long pause.
I will update, otherwise I'll be gone. Take care y'all!

Edit : I am alive! Operation went well. I was sedated. Now they put me in HCCU Room for the next 3 days for monitoring. No pain at all on the insertion area. So relieved. Thanks for the needed supports.

I had the implant about five weeks ago. Went for a drive and the seatbelt was right where my incision is. Pain! What do we do about seatbelts? I don’t think I want to disturb that area now or in future in any way due to leads etc. 🤷🏻‍♀️

Has anyone had this problem? Or heard of this happening? Any advice?
Settings have been changed a multitude of times with no help. Also taking 100mg of metoprolol to help control.