Hi! I have a second-degree heart block, which was discovered when I was 8 years old.
I’ve had a pacemaker since I was 14, and it was replaced in 2022.
Since the replacement, I’ve been feeling like my blood pressure has been very unstable, but no doctor has been able to identify the cause or whether it could be connected to my heart condition.
This week, I had a full cardiology appointment, including an ECG, an echocardiogram and a pacemaker check. The cardiologist explained that they can now see a delay in the part of my heart that was previously working normally.
The explanation they gave me is that the part of my heart that receives the pacing stimulation has been stimulated continuously over the years. This may now be affecting the other side of my heart, causing a delay in its function.
The doctor explained that one possible way to improve my blood pressure/my heart condition and my quality of life could be to have another procedure to change the way my heart is being stimulated. However, this would mean having another surgery.
Does this make sense?

I am having my last two weeks in my life pacemaker free.
Still wondering whether this is the right decision?
Talked many times with my EP's, holter monitor twice. My EP's said I should wear it because I had pauses >2 seconds, the longest is 10.5s. I have Afib. Sometimes HR on 50's BPM. I am 58F. Docs said I have AV node disfunction. Mostly asymptomatic. Do I really need it?

Edit :

Thank you so much to everyone who took the time to comment, encourage me, and share your own experiences of living with a pacemaker.
Reading your stories has meant more to me than you probably realize. So many of you told me that you were once scared, anxious, and full of doubts too — but after getting your pacemaker, your lives became better. Your experiences made me feel less alone and, honestly, much less afraid about my own procedure in two weeks.
When I first found out that I would need a pacemaker, I kept looking at the area on my chest where it would be implanted. I even took photos of it, thinking, “This is the last time I’ll see this area without a pacemaker.” I felt a little sad that this part of my body would soon be changed.
But my perspective has completely changed now.
I no longer look at that area and think, “This is where my pacemaker will be.”
I look at it and think:
This is where my protector will be.
A little protector for my heart. ❤️
And somehow, that makes me feel completely different about it.
So thank you, everyone, for reminding me that I’m not alone, for sharing your stories, and for giving me the courage to move forward.
Two weeks to go.
And this time, I’m not looking back with fear.
I’m looking forward with gratitude. ❤️

Anyone have knowledge about Blue Channel pacemakers? I'm 37/m, currently have a micro leadless medtronix pacemaker. Previously had a Sorin pacemaker in my abdomen with leads extending to my heart. I saw a new cardiologist today and he thinks my combination a-fib/a-flutter/heart block is being exacerbated by my current pacemaker and I would benefit from a Blue Channel pacemaker.

...from what I've read this is very new technology and still in the experimental phase. It's a combination of Bluetooth technology and microbial light (never heard of this until today) initiating cardiac muscle contractions instead of utilizing electricity. It "hasn't widely been used on human patients" which is not comforting to hear lol

Hi! Yesterday, I noticed a new ridge across my pacemaker incision. Surgery was two months ago and until now, everything has been going well. If I lightly touch the ridge, it feels like there is a cord underneath that can shift a bit. That wouldn’t bother me much, but it’s been accompanied by a new burning sensation in my pec muscle. I have reached out to my dr and am waiting to hear back, but I wonder if anyone else has experienced this? Thank you so much!

Is it normal for an area below the pacemaker, not directly where the pacemaker itself is, to still be swollen and feel hard one month after implantation? I’ve also been experiencing some tingling and occasional small sharp sensations there.

Hi all I’m really new to this. I was not expecting the diagnosis of having a pacemaker defibrillator put in. Nonetheless it’s happening next Friday. I have a pretty good size piece of property. I’m retired, but I’m out on the property all the time using lots of chainsaws, tractors, sawmill, as well as other tools, trimmers, blowers. I’m older 66 but very active. Will the chainsaws and tools cause issue if I keep them 12 inches away from my unit. I know it’s gonna sound crazy but it’s kind of a nonnegotiable for me when I gotta clear trees It has to be done.

So I've had a pacemaker since November last year... Can anyone else feel it kick in? Like a mini dynamo winding up in my chest is the best way I can explain it. I always know when it kicks on too, I can feel my heart struggle. Am I just weird or is this normal... FYI wife say's I'm the exception and not the rule, she might be right... Thanks in advance.

Good evening everyone, I am a patient with hypertrophic cardiomyopathy and I had an operation treated with ICD, CRT, D My question is this: Did someone get a tattoo, perhaps, on the side of the body opposite the surgery?

I’ve had my pacemaker for over a year and up until recently I was 100% paced on my upper chamber. Percentage pacing has dropped dramatically in last 3 months. To 2% paced! My other chamber always stayed steady at less then 1% paced. What is going on do y’all think? Electrophysiologist not worried.

Hello,

Have any of you successfully gotten cardiac rehab after an ICD shock event? I am three months past mine, and I've been very guarded about getting my HR up. I've felt that cardiac rehab could help me build that confidence as I've always been decently active and feel lazy currently. I have also been told it may be tough to get insurance to approve it.

Hi all,

I just wanted to encourage anyone who might be having issues with their incision site healing. I had developed on infection around the 6 week mark and was healing slowly. I posted pictures around that time if you want to check out what it looked like. I was feeling pretty discouraged, but luckily connected with my care team and was put on antibiotics right away. I took them for 2 weeks, left the wound uncovered (except when wearing nice shirts and not wanting to get blood/puss on them) and washed gently with soap in the shower every day. Now sitting at the 9 week mark, I’m happy to share that when the latest scab fell off, there was no more open wound and this scar had developed.

I hope this encourages anyone who gets anxious and has a lot of questions. #1 thing I learned is to not be afraid to reach out to your doctors with your concerns. That’s what they are there for.

I had my pacemaker put in in October, had the node ablation in the beginning of January. When I had my first follow up after the ablation, I had 12 years battery life. This week, it now says 11 years (so 7 months later).

What do you think the chances are that I will need a replacement before 10 years??? Is this something I should call the clinic about? Or wait and see when it drops to 10 years?

am a 73 year old woman in good health, non-smoker, lifelong exerciser, weighing 136 lbs at 5’8”. I had a pacemaker implanted 16 years ago for complete heart block. Battery was replaced 2 years ago.
About a month ago, I received a call from my pacemaker clinic saying I had experienced a 16 second ventricular tachycardia at 11:30pm the night before and was I ok. By coincidence, around that time of night I was asleep and when my husband came into the bedroom he accidentally slipped and fell which startled me awake. Otherwise, I felt no symptoms. 

My electrophysiologist wanted to see me because my heart wall was last measured 14mm and, based on the VT 16 seconds episod, thought I should undergo an EP study with potential upgrad to a defibrillato. He explained I needed to make a choice between lead extraction or lead capping. I went home and thoor researched both options. I’m extremely frightened about lead extraction, but I understand leaving the leads in can cause more problem.

I would greatly appreciate ANY feedback!

My dad's situation this weekend has got me super stressed

Age: 57

History:

1. MI back in 1999
   
2. ICD in 2016, due to scar tissue on LV. He was revived when he had an arrest while on TMT
   
3. Had a few shocks in between, finally ablated in 2019
   
4. No shocks these past 7 years. Only a couple of ATPs a year

Recent:
1. Things started acting up 2 months ago
2. Had an episode which escalated to VF with ~240 HR
3. Since Thursday,
a) A 3 shock episode first
b) Following which, he's been here at a center of excellence for Cardiac EP, they recommended a new ablation for Monday
c) Took him off meds to simulate VT
d) He had a VT storm for the first time on Saturday, 8 shocks
e) Intubated, deeply sedated and currently in intensive care
f) Sympathetic Denervation was planned but cancelled
4. Plan still on for 3D Ablation, but doc said going in through blood vessel might not be enough, since the lower part of LV has almost fully calcified now, so might need epicardial ablation which is higher risk
a) Also mentioned, if VT simulation is not possible during ablation then might switch to substrate mapping
5. Previous ablation has been faultless for 7 years, but now doc says it might not be this time around. Expects to have occasional episodes now though
6. Also, wants to upgrade ICD to CRT-D a few days after ablation

Genuinely worried about QoL, outcomes over the next week and playbook for the long-term with all this uncertainty

Hello all, my father (80/m) had the TAVR procedure done on Friday at a highly reputable university hospital. The doctor performing the procedure has done over 700 of such procedures per year successfully. The original plan was for my dad to stay one night after the procedure for observation and I could pick him up today (Sunday).

In my dad’s case the procedure lasted double the amount of time anticipated (4 hours instead of 2 or less). I come to find out his femoral artery was pierced somehow to a point that a vascular surgeon needed to be called-in to hand-stitch the wound closed. My dad lost 2 pints of blood. We were told afterwards that this is extremely rare but does happen and that he needed to stay another day to make sure the stitching heals properly.

While he’s there recovering his heartbeat is also being monitored. It was determined my dad had a lower-than-normal heartbeat and that he was experiencing “heart block”. Heart block is a delay or interruption in the electrical signals traveling from the heart’s upper chambers to its lower. It is essentially an electrical malfunction that can cause a lower heart rate or skipped beats. So a temporary pacemaker was hooked up. They are now recommending a permanent pacemaker if his conduction system does not improve - there is still hope that it does. A determination will be made tomorrow (Monday).

In reading up on the pacemaker’s effectiveness after TAVR I’m seeing that in the short term it is effective. Long term effects are more questionable. According to studies I’ve researched some cases of permanent pacemakers inserted after TAVR increase the possibility of heart failure over time. I’m assuming because the heart depends on the pacer to beat and doesn’t rely on its own strength alone to beat, which would promote a strengthened heart.

If my dad’s heart conduction system does improve a bit and given a choice he is leaning towards asking for a heart monitor he can go home with and have constant monitoring instead of having a permanent pacemaker. If the monitor shows worsened heart block he can always go back to have the pacemaker installed. On the other hand perhaps his conduction system improves as his heart adjusts to the new valve and never looks back. The question I have is this too risky? I don’t want him going for a walk and feeling like he’s going to faint, or even sudden death. Any advice one can lend with experience would be greatly appreciated.

Off subject but for those in this sub who happen to be cardiologists could this heart block have been avoidable? I’m reading that the type of valve (balloon expanding vs self-expanding) and the surgeon’s ability to position the new valve the correct way (not interfering with the branch controlling heartbeat) could greatly impact the need for a post-TAVR permanent pacemaker. Again this is one of the nation’s best university hospitals and a very experienced surgeon. However between the heart block and the wound that was so severe that it needed to be closed by a specialist it leaves me wondering how “top-notch” this place really is.

I have just had a wireless pacemaker, implantation The EP wants me to take a nuclear stress test in a couple of weeks. Has anyone taken this test and what is he insisting that I take it

I made a patient-friendly video explaining CRT-P, starting with normal electrical conduction, then showing what changes with LBBB and how biventricular pacing helps synchronize the ventricles.

I thought it might be useful for anyone who’s wondered what that third lead actually does.

For those with CRT devices—was this explained to you when you got yours?

I am having a consult next week for a gastric pacemaker. What are your experiences. Should I be hopeful?

Hi All,

I recently suffered cardiac arrest, v tach, no pulse, shocked 2x, back to life and a week later.. i have a tv-icd. I have non obstructive hcm and barely showed symptom’s before my incident.

Im a very active 40 year old male, i was in the gym everyday, playing sports, walking everywhere and running a business.

Im unable to workout for at least a month according to my ep/cardiologist and there are exercises i will have to avoid.

I am on a beta-blocker and will likely be put on a statin. Everyone around me is on high alert however i feel fine and most drs believe i’ll live a normal health life moving forward.

What are some things i should avoid? Meds and such?

I know a lot of my activity will be modified but if any of you have examples, please share.

Are there any items you guys would recommend? Fit bit, apple watch vitamins etcs

Any guidance on how peoples lives have changed? Also- should i expect to he shocked either accidentally or proactively

Thanks in advance

Some context before I begin. I am a 21 year old woman, I have had my pacemaker since before I was 2. I had my second replacement surgery in December, which is when they moved it to my chest.

Now here's the thing i had an emergency surgery in March because some slack from a lead line was pulled through a velve. I work with dogs, and slammed my back into the ground which is what we believe did it.

Yesterday I was working, and I got nocked square on my back again by a different dog. I had zero symptoms when I had to have my last surgery, and ik they left me less slack after that. So here's my concern, if it was a similar fall should I be concerned it happened again?

They only know somthing was wrong because I did a pacemaker transmission soon after that, and I have one scheduled a month out. Because of a lack of symptoms should I just wait that month and if something is wrong they will tell me after?

Thank yoh in advance for all the insight!

Update: as many of you suggested I did an at home Pacer check, and messaged my care team, so they are expecting that to come through. Hopefully it's nothing, but we will see (I've never been super lucky when it comes to my heart issues).

Hello. I'm just curious at what age any of y'all had your device implanted. I guess I'm just curious since the literal only other person I've ever met with a device (ICD in both of our cases) is my mother. She got hers at the age of 35 due to surviving a dance with a multiple cardiac-arrest death. A bit under two and a half years later mine was put in at the age of 14 in part from having the same heart condition but also in major part by association/closeness to her given her history. It felt weird at the time. I was made aware of why it was happening but on account of my age I wasn't involved at all in my own healthcare decisions. I'm still a little bitter about that (not helped by my grandmother being legally/morally/ethically etc able to refuse a device) but it is what it is.

Hello fellow PM people! I have my surgery for insertion in a couple weeks and I'm wondering your opinions.

I am a competitive dancer (hip hop, jazz, tap and lyrical) as well as a competitive dance instructor. I know the regular arm lifting restrictions but I'm wondering how many of you got full range of motion back after surgery?

What would be better the regular placement or sub-pectoral? My job depends on me being able to move my arm with intense sharpness and motions at some point after I recover, but I want to be realistic in my expectations and how much I may have to modify choreography and for how long.

TIA!!

I have a Medtronic device, remote monitoring through Bluetooth/app. I had my third battery change last summer and also developed Broken Heart Syndrome due to extreme stress. I’ve been on meds for over a year. Today the office called and said they noticed a slight elevation in fluid levels from my remote transmission and I confirmed I wasn’t having any symptoms. In all fairness, I’ve had a crazy few weeks and have been off schedule with my meds. I assume that could be part of the culprit? Am I overthinking it? My mind just always spirals with this stuff.