r/PacemakerICD

Hi all. I’m a 33 y.o. female and had a pacemaker placed last year for second degree (2:1) av block mobitz 2. Ever since, I’ve continued having strange symptoms. I thought they were a ton of PAC’s / PVC’s, so my EP had me wear a two week zio monitor. I got the results back and it captured 783 episodes of second degree av block. Sure, there were no significant pauses noted. But I’m still concerned. I thought that was why I got a pacemaker, to prevent that. Anyone have any experience with something like this? I’m going in tomorrow for potential pacemaker setting changes. Most of the blocks were between 50-60bpm, so maybe raising my lower limit from 50 to 60 would help some. I feel so defeated and scared. When I feel it happen, it’s like: beat beat skip thud, a few times over. So it’s likely my pacemaker is stepping in as my hr hasn’t fallen like it used to, but I wish it would step in far sooner. Each time I feel that dropped beat (which is like, everytime my body moves even a little bit) it’s totally unsettling and gives me so much anxiety.

Has anyone used a wearable HR monitor? My Apple Watch isn't accurate, and I'd like reliable real-time heart rate data. I've been told devices with ECG shouldn't be worn due to electrical impulses—not sure if that's accurate. My electrophysiologist is away, so I'll ask when he returns.

Maybe I'm overthinking this since the ICD/pacemaker is new and I'm still adjusting to my new normal. Any input appreciated.

Hey guys. My elderly dad with dementia has a pacemaker the docs think might be infected. They can’t do the more precise ultrasound to visualize it so they’re treating him empirically with oral antibiotics for two weeks

If he shows signs of infection, he’s to come back and they’ll do blood cultures again, and do the full 6 weeks of IV antibiotic treatment.

He has a bloodstream infection with a species of enterococcus, and a UTI with a different bacteria. They don’t think the UTI is causing the bloodstream infection.

Has anyone been through this?

Li em alguns lugares que pode ser um "leve choque" até um "coice no peito". Sempre tive a curiosidade, mas nunca a vontade de precisar porque não deve ser nada agradável pra quem precisou

I have to admit, after having my first incident with the ICD, my anxiety and phantom feelings of it happening again are tenfold worse than after my SCA. I do see a therapist, but any other experience or advice on coping with things? It can get bad at times.

Hi folks,

I know it's always said don't take health advice off Reddit but I'm curious about other people's personal situations and history to help me decide on what to do.

At 38 years old, I had a sudden cardiac arrest. Thankfully it happened in a public shop next to a hospital and I was revived by nurses who just happened to be in the right place at the right time, thankfully with a working defib unit.

I spent a week in a hospital and had all the tests under the sun done on me and they found nothing wrong with my heart or anything that would explain what happened to me. They fitted a Boston Scientific ICD into me.

18 months later and I've not had issues with the device until a month ago when I got a call after my weekly press of the button on my bedside cabinet, asking me to go hospital. They told me they had heard a noise on the device and were concerned there might be a faulty lead. They changed it to a different vector (I was trying to keep up with the verbal lingo) and a week later I'm back in the hospital as it's got worse with more noises. They change it back to the original lead but warn me that they have long term concerns over the device.

Yesterday I woke suddenly at 4am with a false shock. The first time I've had one. I wasn't exactly sure that's what it was. It made me sit up in bed suddenly. But it wasn't too much of movement and I mustn't have made a noise myself as it never woke up my wife who was asleep next to me. I wake her up and tell her what happened and we come to the conclusion it was probably a bad dream or indigestion even. I press the button on my bedside cabinet.

I get a phone call the next day (today) with the hospital confirming I've had a false shock. I go into the hospital and they tell me they believe the device is likely to lead to further false shocks and isn't suitable anymore. They tell me I have two options;

1. Have surgery to replace the device with a new one that also adds in a third lead from the right hand side
2. Have the more invasive ICD fitted which is worse surgery and they say could lead to serious complications the longer you live with it. Such as infections, leak issues etc. They tell me they don't usually give that one to people my age unless their bodies reject 1.

They are saying my body shouldn't reject 1 as I've passed all the tests for having it fitted. And yet, my body has essentially rejected this one as the lead has become faulty or out of place presumably.

One theory as to why this has happened is that I've lost 4 stone in the 18 months since I had surgery. Perhaps this has changed the muscle around the device and it's come out of place?

Anyway, all this is frustrating and a psychological nightmare for me. I said to them - What if I didn't get anything fitted back in and lived my life?

They told me that was an option but not one they would recommend. I asked for some time to think about it. They agreed to turning my device off and allowing me to go home (though there specific advice was to be admitted whilst mulling it over but they didn't protest too much when I said I'd rather go home).

I really don't know what to do. I thought when I had my ICD fitted I had bought myself 8 years before the battery ran out before I needed to go in. But it's not even been 2 years and I've got an issue.

I don't know if I can mentally put myself through another surgery to get a replacement fitted. To go through with the anxiety of the whole thing, to have them turn my heart off again to make sure this new device is working properly, to have to live with the existential crisis of having this device hang over me with the possibility of going off at any moment. I was fortunate it went off when I was in bed and it didn't cause me any danger. But now if I'm crossing the road or driving (though obviously not for the next six months) I could cause serious harm to myself and others with a false shock.

My heart is in good shape and they've never had any unusual readings since I came out of hospital almost 2 years ago. Is it the stupidest thing in the world to not get one fitted? Has anyone decided to reject the ICD and not get it done? And if so, what kind of thing have they done to make sure they are as monitored as possible 24/7? I have a defib at home and I'm always aware of places where they are fitted and people who are with me know about my condition. It's never full proof obviously but I've lost faith in the device and can't help but shake off the feeling that every year I'm going to have to do this. And I may never suffer from a real episode ever again.

Weirdly with them turning my device off temporarily whilst I decide on what to do... I've never felt more free. For once I'm not thinking about the device at all and feel normal.

I could in theory have people to watch over me and could invest in tech that keeps tabs on me at all times... has anyone ever done that or am I living in fantasy land?

I have sick sinus syndrome and recently got a pacemaker, woke up this morning crummy and was driving, saw my watch saying my hr was at 52bpm while usually it’s at 90bpm or something like that while driving. Should I ask my doctor to set the pacing a higher threshold, currently at 50s.

Well I quit cannabis since my dr told me it would mean I don’t have to get a pacemaker. It’s been a month since and I got a new heart monitor 3 days ago, received a call this morning and apparently I had a 3.67, 6.0 and 4.5 pause yesterday. They want me to get a pacemaker, I’m so mad, up until a few months ago I had basically no health issues, I’ve still never passed out. And the past month has been the easiest heart wise, I only have palpitations on days I’m stressed.

What’s it like having a pacemaker? My dr hates leafless ones but he’s also an old timer so he might be biased

Hello, I am 100% pace with a biventrical pacemaker due to complete heart block. This is my first pacemaker and I’m due for replacement this year. I recently saw my EP and had an echo done, EKG and pacemaker interrogated and everything came back normal. I was told I have 5 months of battery left . but I don’t not feel well. I am short of breath, very fatigued, have brain fog and am experiencing dizzy spells. The cardiologist has no answers for me, everyone say I am fine but I am not. This has been going on for 2 weeks and during this time I also saw my PCP who I had draw some blood to check my iron and thyroid as well as my B12 and Vit D and again everything is normal. I just don’t understand what is happening. My gut tells me it’s my pacemaker needing to be replaced but my cardiologist says I’m physically fine because the test are all normal. I have never felt this way before. I was schedule for surgery in 1 months time but Iv recently requested for a sooner surgery date. Has anyone else felt this way before pacemaker replacement?

Hi everyone - My husband, 33M, has a dual chamber ICD (Biotronik), 2 leads that are 9 y/o. We have seen many EPs to talk about a possible extraction surgery mainly to prevent a future surgery that represents more risk in case of malfunction, infection and obviously because of the age of leads after 10-15 years. We are considering Cleveland Clinic as the hospital for the procedure.
Have you had or heard of young(er) people having leads extraction to prevent a bigger risk surgery in the future? Any testimonies about similar leads-age procedures?
Any input is valuable. Thanks everyone!

Husband had CRT-D placed 3 days and is on blood thinners. He has some bruising on his bicep. Is that normal? From blood pooling down?

We see some doctors in the morning. Just want some opinions

Hi all,

New here, but if I could get some general information or experience from others I would appreciate it.

My mom texted me this morning that my 90 year old grandma is in the hospital getting a pacemaker today. Out of the blue (which I suppose is another story).

I would just like to hear some experiences and prognoses of survival for those in their 90s and beyond on survival rare of the surgery itself and quality of life after.

How many on here have or are taking Amiodarone? It appears that I will at least be on it for 90 days, and then some other game plan will be formulated. The potential side effects are what make me nervous. I've had two separate cardiologists at two separate practices tell me it's the right choice at this time though. What is your all experience with this medication? Just really nervous about everything. I also take Metoprolol.

So i have had a pacemaker since i was three months old. Im 21 now and its located abdominaly next to my belly button. I work with special needs kids and they are quite violent at times. One of them in particular had kicked me in the pacemaker (he dosent know i have one and he cannot communicate) and so i went to a and e just for them to do bloods and say go home there’s nothing we can do. Should i be concerned?

Hello! This post is inspired by the post about the PM pain being worst then the after pain of child birth (ig) so shout out to that person!
What are the most annoying things about owning a PM/ICD?
I ll tell some of mine.
I was under local anesthesia when i did my implant. When they made my pocket, at one point, I felt like they were gonna rip my collar bone, lung and my ribs- They put more anesthetic, didnt do shit, so i had to indure that. Cried and felt sick, almost puked there.
Also, when I have sex, i feel my PM NOT MOVING WITH MY BODY. my body go up and down against the bed, my PM just chillin, have to rise my shoulder so it doesnt feel awkward
Also, its very close to my armpit and sometimes it ll move closed to my armpit. I KNOW I LL HAVE A BAD DAY BECAUSE MY ARM WILL FEEL HELD DOWN BY THAT MOTHERFUCKER.

Buuuut, at the end of the day, these little shits keep us alive and well. I am more than thankfull to have a this beautiful pacemaker. I cannot wait to hear what you guys have to say.
Also sorry for swearing.

Every medical professional (of course) said having a pacemaker implanted was a simple procedure, no big deal at all. They all lied. WTAF?!?!?!

I gave birth to my daughter, I’ve had a radical hysterectomy, gall bladder removal and even major hand surgery reconstruction including several bones and severed ligaments to repair. None of those were as brutal as having this pacemaker surgically placed today.

And they send you home with NO pain medication!!! Damn! What the shit? Thank the good Lord I had some on hand that I take for RA flares. I was soooooo not prepared for all of this. How long does this pain last?????

My grandfather (80 years old) will soon receive an ICD due to a severe heart failure he suffered last week and a decades long frail cardiological situation.

Doctors, however, aren't very optimistic about the procedure. They told him that the risk of endocarditis, complications and infections is very high, so much so that the choice between getting the ICD and living day by day with the risk of sudden cardiac arrest isn't that clear-cut, in their opinion.

He chose to do it anyway, and we agree with him because an infection is a more nuanced threat compared to cardiac arrest: the former could even be mild and treatable with just antibiotics, the latter would always be a dice throw for his life.

Moreover, as far as I know, an ICD option isn't even offered to begin with if the patient isn't expected to survive heart failure for at least a year, so it's not even some kind of desperate effort to prolong his life by just a few months.

Are doctors being overdramatic or trying to preemptively wash their hands in some way? Otherwise why would they even offer him a choice if the surgery carries so many risks?

Thank you all for reading this so far.

Hi All! My docs just recently changed their minds and now I’m getting S-ICD instead of traditional. I am also left-handed, and very curious as to if/how that will impact my recovery as I know many left arm movements are uncomfortable for awhile. Just curious for anyone else’s experiences being left-handed with S-ICD!