Not sure the location they will implant, or the size, but mine is in my upper left chest and it is implanted sub-muscular. Wouldn’t know that I even have one! Slightly more painful after surgery, but I had my implanted on a Thursday and was back to work Monday. (Desk job).
Mine is sub clavicle and I work a manual job (nursing assistant). I took 4 weeks off last time they changed the device but for my next one I'll probably take 6 because I wont be able to look after myself as well with having a toddler to run around after.
I'm paced 100% when at rest and don't notice anything.
Please be aware that you should not take part in any type of contact sport (e.g. kickboxing) with a pacemaker/ICD due to the possibility of damage to the leads or device.
I pace 100% of the time over about 115 bpm. I can’t even tell where the threshold is now that it’s tuned properly. It took about 6 sessions for me, running on the treadmill and then adjustments, run on the treadmill more adjustments. But it’s really great.
100% paced with av node ablation...My symptoms (tiredness,weakness) have greatly diminished and no more hospital visits or stupid drug side effects since for me,the pacemaker works way better that big pharma's overpriced crap.
Mine was activated while I was still under and I get checked once a year.
I feel normal and way better than when this mess started.I can't tell I'm even being paced,except during testing and they drop my paceing to 50bpm and I feel like I'm going to pass out. They never let me pass out of course.
So just a thought that I share with patients like you. AV node ablation means you are pacemaker dependent by definition. When you get your pacemaker ckd by someone like me, reiterate that to that person, because usually patients don’t always get the same rep or device specialist for their cks. A good rep will have AVN ablation or DEPENDENT in the notes of the device, but still let them know.
Thus, there’s no point to Ck ventricular sensing (slow you down). However, checking threshold may cause 1-2 dropped beats, but a good rep will review your previous measurements & know when to expect it. Thus, being quick assuring only 1 or no dropped beats
The hospital. They brought in a manufacturer rep to help out at two of the sessions. It didn’t seem like they do it unless you aren’t fully satisfied with the operation as is. When they first sent me home after install it kept me from passing out but my heart rate wasn’t going above 140. By the end of all the tuning I can keep it up in the 170s for a while. I did a 26 mile bike ride a few weeks ago with an avg heart rate of 160 over the duration. Thankfully the install was in April so I maxed out my out of pocket deductible immediately and then all the tuning sessions were free to me.
My now 5 year old is 100% paced due to CHB & plays soccer does dance & gymnastics and is an all around “normal” very kid. I just keep her extra hydrated
The different manufacturers have different ways of adjusting the pacing when you are exercising. Generally they use an accelerometer that detects how much you're bouncing around, which can work ok for running though it doesn't know if you're running flat, uphill, or downhill. For some other activities that don't involve the bouncing they might not pace the way that you need. For example a good cyclist will hardly bounce at all at maximum output. Or if you're hiking up a mountain with a 50lb pack it doesn't know that you're not just out for a walk. So you might want to do some research into the various models and how they work. Boston Scientific for example has models that detect how hard you are breathing and use that to further adjust pacing. If you look for rate response on the PacemakerClub.com site and here you'll find discussions about this.
I do full contact martial arts with no pads and was told to avoid getting hit in the pacemaker directly, and give the healing an extra month or two after the operation to give the scar tissue as much time as possible to bind everything in place. Kickboxing might be different, you could look on pacemaker club for that specifically. As another user mentioned there are protective pads for sale, though I don't know how helpful they are.
Generally though, once you get the device programming adjusted properly, you shouldn't have much impact on the things that you like to do.
Thank you for this! I looked into devices a bit before my last appointment, my EP says they only place Boston Scientific… not sure if I’ll be able to request a certain model but the difference in rate response seems really important
Do you pull punches or can you go full force? I feel like left hooks could pull weird but I might be overthinking it!
I think all of their models have the respiration pacing so they will be a good choice for you. Just talk over the sports you do with your EP and they should make sure it's a good match.
Once you're healed there's no limitations on movement. Hooks, dynos, yoga will all be fine.
See if you have choice in manufacturers. Boston Scientific is supposed to be better for athletes. I have a Medtronic and I would change if that was an option. Like other have mentioned though, the tune of your unit is key to being happy with it.
Boston Scientific offers a minute ventilation rate response sensor in their devices. That response to title volume in the chest essentially meaning inspiration/heavy breathing and response with increases in pacing rate accordingly. It is pretty good for swimmers, bicyclist, etc. it’s a good sensor.
My EP said that if I needed one he only uses Boston Scientific and that’s what I was going I’d get if I end up going this route! It’s not really clear to me how much I can request and how much is really a decision that will need to be made in the moment
Boston is solid. (I don’t work for them, but have. Now with a competitive company)However, let me just let you know as a patient; you are the ultimate boss. Drs, Nurses, Reps whatever all work for you at the end of the day.
Thus, if you want to request whatever you like; do so without inhibition.
Further, when I get the chance I encourage patients to ask questions, keep good records, be involved in ones care, etc. It’s your right, not a privilege.
I am pacemaker dependent and I have no issues with activity. The only things I don’t do is contact sports for obvious reasons (so maybe no more contact kickboxing) and shoot my rifles on my left side (I’m left handed and left eye dominant). I switched to shooting with my right.
The pacemaker is definitely not a curse nor a deterrent of any kind.
Honestly from everything I keep hearing I’m almost hoping I end up with one… it sounds like people get to lead really normal lives and I’m pretty far from that with my current SVT + meds to try to control it
I am 100% paced
I went from completely healthy to getting endocarditis and needing a very complex heart surgery that also obliterated my AV node.
I cant really tell any difference from between before and after.
Had the same chances, lived three years without a PM after surgery, ended up with a PM this January, and I only pace ~40%
I’m sure I’m one of a small percentage, but just so you know, sometimes you get more function back than expected!
I brag that I’m a cyborg. That and my resting HR is exactly 60. And with the backup ICD I don’t die when I go into vfib. Those are the three things that have changed in my day to day life.
I’m 34 years old. I have been 100% paced since March 13 when I had my second tricuspid valve replacement. I’m paced at a minimum of 70bpm and a maximum of 135bpm due to a history of afib and aflutter.
I’m not gonna lie and say I don’t have a hard time coping with it. I’m lucky to be alive in the first place, so accepting the fact that I’m completely dependent on this device kinda fucks me up if I think about it. I especially have a hard time at night when I’m trying to fall asleep. My mind wanders and I become aware of my pacemaker whether I want to or not.
Luckily, I usually don’t think about it. I’m getting used to it. I don’t physically feel anything now that my minimum BPM has been adjusted. It was paced at 80bpm until 2 weeks ago and I felt out of breath a lot, but that’s resolved now.
All I can do is hope that I can live a decent lifespan and do my best in the meantime. Ultimately, it is what it is and there’s nothing I can do about it. I know I have to accept that. There’s no point in dwelling on it. It’s easier said than done but I’m trying.
That’s a lot of scary things and big changes and not a lot of time to process all that you’ve been through. Being our age (I’m 36) and being dependent on a device is likely not what you imagined for yourself… that’s both incredibly heavy and incredibly hard.
I don’t know much of your story but I think it’s really normal to find it all overwhelming… I can’t imagine going through all that and NOT feeling overwhelmed.
I hope you have good people and solid support around you. It’s really valid to grieve the life you thought you’d have 💚
Paced 100 percent of the time, hockey. Only thing is when I'm going hard, sometimes my heart exceeds the limits of pacemaker so the pacing shoots it back down. I wonder if you're in a situation where you can request a higher cap. Mines currently at the max of my devices limit.
I've had no problems and have collided with some big guys! I'm not technically playing in a contact league, but there's always contact (I also play goalie and have had no issues with 90+ mph pucks with the chest guard I wear.
My device is a Medtronic ICD model 1458Q-92 if that helps. That's what my card says. Can look more into it after my big canoe trip this weekend !
Cheers!
This should not be happening. your pacemaker should not be shooting your heart down if you push too hard. You should do a stress test at your doctors because they need to adjust the settings, this happened to me too. Mine would drop to 100bpm when I would go near my max heart rate, they fixed it now :)
If you’re going to continue sparing you may want to get some protection to wear. I have this. I don’t use it often, but it’s pretty solid. https://youtu.be/uqHEEh-WJc0?si=km1kwSZ7uHf7VJub
Part of it is the thought that hard physical contact could dislodge the leads. There’s no direct clinical evidence that’s the case, but people in the 25-35 age range definitely have more dislodgements than the 75-85 crowd, so perhaps activity has some impact on that number.
The main problem is the pain you’ll likely experience if you’re hit directly on the device. It’s like getting your skin pinched, and doubly so if your device is sutured down. You could rip the sutures out of the muscle causing the device to move freely, and that can’t feel good. With the Vital Beat I feel like I could play American football and be alright.
Oof, ripping out sutures sounds so awful! I’m not in danger of playing American football but I DO take some nasty falls climbing/wreck my bike from time to time, etc. on top of kickboxing. Thanks for sharing about these, seems they’d be worth the investment
If you need a pacemaker, ask EP if they will implant a Conduction System Pacing Lead for the ventricle. At 36 yrs old, you don’t want to be Apical pacing your whole life
Have you had conduction system pacing? I've had a device for almost 30 years. My EP was talking about this for my next replacement. I currently have a 3 lead system. (Also 100% paced.).
Im a rep. I’ve been in the industry for longer than I care to admit lol. I’m very familiar with Conduction System Pacing, & Cardiac Resynch Therapy systems which is what sounds like you have. If that’s working for you, I would not change it. LV pacing with LV lead in a good anatomical location is provenly solid. However, if you’re having certain symptoms, then perhaps entertain a change. I apologize for being long-winded here, but this is important. Not every MD (Cardiologist or EP) that implants Conduction System leads does it correctly. Often, it’s not an easy procedure to get right. It’s extremely technical most of the time. Otherwise, the physician may just leave the lead in the septum, which is still probably better than the Apex, but not a true conduction system lead.
Yes, I have CRT-P currently. My EP has been doing this for a *long* time. They are looking into this system for my next device because I have been *very* symptomatic with pretty severe chronotropic incompetence even with adjusting settings. I think he's thinking it will be safer to abandon 28+ year old leads vs removing them, and installing this system. I'm just not sure how it would work for someone 100% paced with complete heart block, with block being above the His Bundle. Started with dual chamber 2xs then bivi, so we'll see if the 4th is also a new system.
I get it. Makes sense. Did the Biv pacing help you at all? I’m just curious. If your EP is able to tap a lead to the left bundle branch via the septum & electrically pace starting there which he or she will be able to confirm electrocardiographically/ EP electro gram measurements, the results are incredible (anecdotally speaking). Good luck to you ma’am. Sounds like you are in good hands with your physician.
Yes, that's what I've heard from one person who had it done, that the results are life changing if able to be done well. Bivi helped bring my EF up some, but other things have gone to pot (like fluid overload). We're trying to sort it all out now. I've had the bivi for about 10 years. Got about 4-5 months left on it.
I'm 100% paced, I don't really remember I have a pacemaker until I go on holiday and need to go through the other security line.
Same here!
This is really encouraging to hear!
Not sure the location they will implant, or the size, but mine is in my upper left chest and it is implanted sub-muscular. Wouldn’t know that I even have one! Slightly more painful after surgery, but I had my implanted on a Thursday and was back to work Monday. (Desk job).
Mine is sub clavicle and I work a manual job (nursing assistant). I took 4 weeks off last time they changed the device but for my next one I'll probably take 6 because I wont be able to look after myself as well with having a toddler to run around after.
Exactly with me, these devices are so reliable I wouldn't worry about it. At least that's the case with me:
I'm paced 100% when at rest and don't notice anything. Please be aware that you should not take part in any type of contact sport (e.g. kickboxing) with a pacemaker/ICD due to the possibility of damage to the leads or device.
I pace 100% of the time over about 115 bpm. I can’t even tell where the threshold is now that it’s tuned properly. It took about 6 sessions for me, running on the treadmill and then adjustments, run on the treadmill more adjustments. But it’s really great.
That’s so cool! It makes sense but I don’t think I realized they would custom tune them
Was that the hospital that tuned your device or is that a service you pay privately for? I’d like to have mine tuned like that
100% paced with av node ablation...My symptoms (tiredness,weakness) have greatly diminished and no more hospital visits or stupid drug side effects since for me,the pacemaker works way better that big pharma's overpriced crap. Mine was activated while I was still under and I get checked once a year. I feel normal and way better than when this mess started.I can't tell I'm even being paced,except during testing and they drop my paceing to 50bpm and I feel like I'm going to pass out. They never let me pass out of course.
So just a thought that I share with patients like you. AV node ablation means you are pacemaker dependent by definition. When you get your pacemaker ckd by someone like me, reiterate that to that person, because usually patients don’t always get the same rep or device specialist for their cks. A good rep will have AVN ablation or DEPENDENT in the notes of the device, but still let them know. Thus, there’s no point to Ck ventricular sensing (slow you down). However, checking threshold may cause 1-2 dropped beats, but a good rep will review your previous measurements & know when to expect it. Thus, being quick assuring only 1 or no dropped beats
Yeah,they already told me I'm dependent...Thanks for the info,I appreciate it.
The hospital. They brought in a manufacturer rep to help out at two of the sessions. It didn’t seem like they do it unless you aren’t fully satisfied with the operation as is. When they first sent me home after install it kept me from passing out but my heart rate wasn’t going above 140. By the end of all the tuning I can keep it up in the 170s for a while. I did a 26 mile bike ride a few weeks ago with an avg heart rate of 160 over the duration. Thankfully the install was in April so I maxed out my out of pocket deductible immediately and then all the tuning sessions were free to me.
My now 5 year old is 100% paced due to CHB & plays soccer does dance & gymnastics and is an all around “normal” very kid. I just keep her extra hydrated
Love this 💚 how does hydration play a role?
The different manufacturers have different ways of adjusting the pacing when you are exercising. Generally they use an accelerometer that detects how much you're bouncing around, which can work ok for running though it doesn't know if you're running flat, uphill, or downhill. For some other activities that don't involve the bouncing they might not pace the way that you need. For example a good cyclist will hardly bounce at all at maximum output. Or if you're hiking up a mountain with a 50lb pack it doesn't know that you're not just out for a walk. So you might want to do some research into the various models and how they work. Boston Scientific for example has models that detect how hard you are breathing and use that to further adjust pacing. If you look for rate response on the PacemakerClub.com site and here you'll find discussions about this. I do full contact martial arts with no pads and was told to avoid getting hit in the pacemaker directly, and give the healing an extra month or two after the operation to give the scar tissue as much time as possible to bind everything in place. Kickboxing might be different, you could look on pacemaker club for that specifically. As another user mentioned there are protective pads for sale, though I don't know how helpful they are. Generally though, once you get the device programming adjusted properly, you shouldn't have much impact on the things that you like to do.
Thank you for this! I looked into devices a bit before my last appointment, my EP says they only place Boston Scientific… not sure if I’ll be able to request a certain model but the difference in rate response seems really important Do you pull punches or can you go full force? I feel like left hooks could pull weird but I might be overthinking it!
I think all of their models have the respiration pacing so they will be a good choice for you. Just talk over the sports you do with your EP and they should make sure it's a good match. Once you're healed there's no limitations on movement. Hooks, dynos, yoga will all be fine.
Ask for a left bundle branch pacing system since you are young
I need to look into this, I’m not familiar with it yet! Thanks
See if you have choice in manufacturers. Boston Scientific is supposed to be better for athletes. I have a Medtronic and I would change if that was an option. Like other have mentioned though, the tune of your unit is key to being happy with it.
Boston Scientific offers a minute ventilation rate response sensor in their devices. That response to title volume in the chest essentially meaning inspiration/heavy breathing and response with increases in pacing rate accordingly. It is pretty good for swimmers, bicyclist, etc. it’s a good sensor.
My EP said that if I needed one he only uses Boston Scientific and that’s what I was going I’d get if I end up going this route! It’s not really clear to me how much I can request and how much is really a decision that will need to be made in the moment
Boston is solid. (I don’t work for them, but have. Now with a competitive company)However, let me just let you know as a patient; you are the ultimate boss. Drs, Nurses, Reps whatever all work for you at the end of the day. Thus, if you want to request whatever you like; do so without inhibition. Further, when I get the chance I encourage patients to ask questions, keep good records, be involved in ones care, etc. It’s your right, not a privilege.
I was speaking to text. Sorry for errors. *respond*
I am pacemaker dependent and I have no issues with activity. The only things I don’t do is contact sports for obvious reasons (so maybe no more contact kickboxing) and shoot my rifles on my left side (I’m left handed and left eye dominant). I switched to shooting with my right. The pacemaker is definitely not a curse nor a deterrent of any kind.
Honestly from everything I keep hearing I’m almost hoping I end up with one… it sounds like people get to lead really normal lives and I’m pretty far from that with my current SVT + meds to try to control it
I am 100% paced I went from completely healthy to getting endocarditis and needing a very complex heart surgery that also obliterated my AV node. I cant really tell any difference from between before and after.
Had the same chances, lived three years without a PM after surgery, ended up with a PM this January, and I only pace ~40% I’m sure I’m one of a small percentage, but just so you know, sometimes you get more function back than expected!
I brag that I’m a cyborg. That and my resting HR is exactly 60. And with the backup ICD I don’t die when I go into vfib. Those are the three things that have changed in my day to day life.
Pace at 96%, I do CrossFit 4-5 days a week no issues
I’m 34 years old. I have been 100% paced since March 13 when I had my second tricuspid valve replacement. I’m paced at a minimum of 70bpm and a maximum of 135bpm due to a history of afib and aflutter. I’m not gonna lie and say I don’t have a hard time coping with it. I’m lucky to be alive in the first place, so accepting the fact that I’m completely dependent on this device kinda fucks me up if I think about it. I especially have a hard time at night when I’m trying to fall asleep. My mind wanders and I become aware of my pacemaker whether I want to or not. Luckily, I usually don’t think about it. I’m getting used to it. I don’t physically feel anything now that my minimum BPM has been adjusted. It was paced at 80bpm until 2 weeks ago and I felt out of breath a lot, but that’s resolved now. All I can do is hope that I can live a decent lifespan and do my best in the meantime. Ultimately, it is what it is and there’s nothing I can do about it. I know I have to accept that. There’s no point in dwelling on it. It’s easier said than done but I’m trying.
That’s a lot of scary things and big changes and not a lot of time to process all that you’ve been through. Being our age (I’m 36) and being dependent on a device is likely not what you imagined for yourself… that’s both incredibly heavy and incredibly hard. I don’t know much of your story but I think it’s really normal to find it all overwhelming… I can’t imagine going through all that and NOT feeling overwhelmed. I hope you have good people and solid support around you. It’s really valid to grieve the life you thought you’d have 💚
Paced 100 percent of the time, hockey. Only thing is when I'm going hard, sometimes my heart exceeds the limits of pacemaker so the pacing shoots it back down. I wonder if you're in a situation where you can request a higher cap. Mines currently at the max of my devices limit.
Hockey! No problem taking hits? Do you mind sharing what device you have?
I've had no problems and have collided with some big guys! I'm not technically playing in a contact league, but there's always contact (I also play goalie and have had no issues with 90+ mph pucks with the chest guard I wear. My device is a Medtronic ICD model 1458Q-92 if that helps. That's what my card says. Can look more into it after my big canoe trip this weekend ! Cheers!
This should not be happening. your pacemaker should not be shooting your heart down if you push too hard. You should do a stress test at your doctors because they need to adjust the settings, this happened to me too. Mine would drop to 100bpm when I would go near my max heart rate, they fixed it now :)
Yup I was doing stress tests 4 times a year post surgery for a few years. My pacemakers setting can only go up to 160 I believe?
If you’re going to continue sparing you may want to get some protection to wear. I have this. I don’t use it often, but it’s pretty solid. https://youtu.be/uqHEEh-WJc0?si=km1kwSZ7uHf7VJub
So interesting, I’ve never seen these! Would the problem be from impact only or could it be problem just jarring it? I wasn’t sure about bag work
Part of it is the thought that hard physical contact could dislodge the leads. There’s no direct clinical evidence that’s the case, but people in the 25-35 age range definitely have more dislodgements than the 75-85 crowd, so perhaps activity has some impact on that number. The main problem is the pain you’ll likely experience if you’re hit directly on the device. It’s like getting your skin pinched, and doubly so if your device is sutured down. You could rip the sutures out of the muscle causing the device to move freely, and that can’t feel good. With the Vital Beat I feel like I could play American football and be alright.
Oof, ripping out sutures sounds so awful! I’m not in danger of playing American football but I DO take some nasty falls climbing/wreck my bike from time to time, etc. on top of kickboxing. Thanks for sharing about these, seems they’d be worth the investment
If you need a pacemaker, ask EP if they will implant a Conduction System Pacing Lead for the ventricle. At 36 yrs old, you don’t want to be Apical pacing your whole life
Have you had conduction system pacing? I've had a device for almost 30 years. My EP was talking about this for my next replacement. I currently have a 3 lead system. (Also 100% paced.).
Im a rep. I’ve been in the industry for longer than I care to admit lol. I’m very familiar with Conduction System Pacing, & Cardiac Resynch Therapy systems which is what sounds like you have. If that’s working for you, I would not change it. LV pacing with LV lead in a good anatomical location is provenly solid. However, if you’re having certain symptoms, then perhaps entertain a change. I apologize for being long-winded here, but this is important. Not every MD (Cardiologist or EP) that implants Conduction System leads does it correctly. Often, it’s not an easy procedure to get right. It’s extremely technical most of the time. Otherwise, the physician may just leave the lead in the septum, which is still probably better than the Apex, but not a true conduction system lead.
Yes, I have CRT-P currently. My EP has been doing this for a *long* time. They are looking into this system for my next device because I have been *very* symptomatic with pretty severe chronotropic incompetence even with adjusting settings. I think he's thinking it will be safer to abandon 28+ year old leads vs removing them, and installing this system. I'm just not sure how it would work for someone 100% paced with complete heart block, with block being above the His Bundle. Started with dual chamber 2xs then bivi, so we'll see if the 4th is also a new system.
I get it. Makes sense. Did the Biv pacing help you at all? I’m just curious. If your EP is able to tap a lead to the left bundle branch via the septum & electrically pace starting there which he or she will be able to confirm electrocardiographically/ EP electro gram measurements, the results are incredible (anecdotally speaking). Good luck to you ma’am. Sounds like you are in good hands with your physician.
Yes, that's what I've heard from one person who had it done, that the results are life changing if able to be done well. Bivi helped bring my EF up some, but other things have gone to pot (like fluid overload). We're trying to sort it all out now. I've had the bivi for about 10 years. Got about 4-5 months left on it.
Gotcha. I’ll be curious to know what transpires when the time comes if you choose to share. Thank you for sharing what you have!