A question for those of you with pacemakers

[DanielB]

Hi,

I've been told that due to heart block and bradycardia (surgery induced) I am going to be getting a pacemaker. Fine with me. Though I was okay for the first three months after surgery, when I got back to work, I started having both issues and, after testing, I am getting one soon and am looking forward to a regular heart rate again.

My question for you pacemekaer veterans is this: based on your experience in getting one, is there anything you know now that you wished you knew about when getting one? I have searched and read a number of posts and it seems like there are a few different types and especially settings that eventually lead to the thing being tweaked to being the best fit for each individual -- anything I might want to ask or tell the doc up front to move this process along at the most efficient way to get to the 'ah, now that's working and feeling just right' place sooner than later? I exercise (light workouts and walking, but not a gym or runner type guy), so there's not the strain on it as much as some who are more fitnses oriented.

I meet with the electrophysiologist this coming Wednesday and would love to have all my ducks in a row before they do their thing.

Thanks in advance for your insight.

 

[Julian]

Well I'm no veteran but I will chime in. I've had my pacer for about 9 months now. If you have a "rate response" feature on your pacemaker and don't medically need it tell the doctor to turn that feature off ASAP. That thing was annoying for the first 4 months. Every time my body started to bounce around my heart rate would jump. If I was walking fast it would send my heart rate as if I was running. LAME!

There also maybe a way to turn down the "jolt" from the pacemaker pace. I think its like a voltage thing, if its set a certain way you can feel the "pacing" more. Some people don't mind it, I did and they backed it off for me so I don't notice it as much anymore, I heard one person call it the "capture rate" once.

Also, for my pacemaker it auto tested itself everyday at precisely 4:30PM. It would send some kind of lead test and it would be uncomfortable sometimes stopping me from talking in mid sentence, hard to explain. I told them to turn that thing off, I want the bare minimum running.

Other than that, I think I'm pretty happy with my current settings but it took about 4 months to get it set right.

There is a slight risk of damaging your tricuspid valve with a pacemaker. The leads go through that valve and some people develop a bad leak because of it over time and need to get it repaired. Also there is a risk of developing heart failure because of the pacing.

 

[Lynlw]

H Justin got one when he was 10 from heart block from the cath the day before surgery, his was in his abdomen since hey had him open for his surgery and they tend to place them there in younger people alot. IF he was getting one now and we had time to ask questions, I would be asking about getting one of the newer MRI compatible ones, since chances are you'll probably want to have MRIs in future for something

 

[DanielB]

Thanks Julian & Lyn. Julian, I did some poking around and did find 'capture threashold' info -- it is the range where the low end is determined for the voltage required for stimulating a pulse. Interesting -- I'll discuss how my doc is determining that when they set it up. [I have seen some are 'Auto Capture' as well. I had not heard of possible Mitral valve damage, I'll add the routing 0f the wires and damage it may cause to my list. Lyn, the MRI question is a solid one as well. After my past year's experience where I have seen so many tests (all except an MRI) no telling what I might need in the future and I would like my doc to have ll the tools in the tool box availble if he needs them.

 

[Julian]

Its the tricuspid valve that may suffer from the leads. And the MRI safe pacer is cool but the model medtronic makes only paces to 160bpm... My doc was going to give me that one but because my age he opted for the pacemaker that is not MRI safe but paces up to 220 i think. My leads are MRI safe leads should last 20 to 30 years. If your heart rate goes above the pacemaker limits it doesnt mean it slows your heart down it just means it doesnt pace you if you go into block in high heart rate youll be on your own until you come back down to the pacing threshhold.

 

[ElectLive]

You know, I agonized every waking hour over valve choice for my 4 weeks of pre-surgery, then on Day 3 post-op, when I got the final word I needed a pacemaker, it took me all of two seconds to shrug my shoulders, nod my head, and say: "Ok, whatever...just put one in". :thumbup: So, I guess my eyes must have just glazed over any tricuspid valve information on that form I signed in my haste to escape the ICU. :eek2: Now, seriously though, life with a pacemaker is really not that big a deal, we just do what we have to do and return to normal. So just take advantage of this opportunity to research and learn more, and you are certainly better off for it.

Medtronic's MRI "compatible" pacemaker wasn't available for me anyway, but is obviously a potential breakthrough. As Julian said, though, it is only for certain applications and under certain conditions, so I'm not sure how big a deal it really is, but obviously worth asking about. CT for the most part is a good alternative anyway.

Remote monitoring is probably the coolest feature of mine. You connect a transmitter to your phone line (old-school land line, though, no internet or wi-fi yet) and it automatically sends data to the Clinic every few months (per schedule) or in case of some emergency events also (more so for ICDs). If something feels off, you can call the Clinic, push the button on the transmitter, and they will be able to double-check things. Some diagnositics and settings changes only happen in person, though, but that's only once a year for me now.

My settings adjustments have been amazingly smooth, more so than some others I've read about here. If I didn't have a scar and lump in my chest, I really would have no idea now that I'm being paced, and my heart block never got better, so still paced 100%. If I really pay attention, I can kind of notice when I go above my upper limit, but even that I can just barely notice since it only happens with heavy exercise so it is already sumperimposed with fatigue and shortness of breath anyway.

My battery life is supposed to be around 8 or 9 years (also can be tracked remotely)...I'd be curious how much this varies by type, and by pacing amount, etc. Now, I do have one complaint, but it pretty much goes with the territory I think. Chest strap heart rate monitors just don't seem to work with mine. I've tried several tricks I read about and none work so far. It seems to be a frequent, but somewhat undefined problem, with nearly all pacemakers. St. Jude offered no help on this, and finally I've had to settle for a much less user friendly but at least workable finger monitor.

 

[Madsometimes]

Similar to ElectLive. I became 100% dependent on my pacing wires 3 days after surgery. Every time the temporary pacer was turned down, I collapsed like a rag doll, and it was obvious that I was not leaving the hospital without a permanent PM. Had I been less postoperative, I would have asked for an MRI compatible PM. Other than that, I am happy with my PM and my settings. My settings are between 60 and 130, DDD. At my next check, I may get a sleep mode which goes down 50 at night. I'm still 100% paced.

 

[DanielB]

Thanks again Julian and ElectLive -- good info for 'the list'. I hear you on getting what's needed and getting on with your life, I'm there. It's not like I have a choice of getting a pacemaker or not, I must have one and am actually looking forward to having one in place as I expect to feel much better with one.

I will say though, through this entire process from the initial diagnosis through surgery up until now, I have been very fortunate that my team of doctors has been right on with what I have researched in advance, applying top of the line, state of the art methods and equipment, so I would not be surprised if that is what I run into with the pacer as well. It just helps my peace of mind knowing ahead of time what I'm getting into allowing me to have an inteligent discussion with my care giver.

 

[AgilityDog]

Dan, you will feel better immediately. Like, as soon as you wake up with the pacer!

Gee, I'm glad I've got the high speed pacer option on m ICD, since I go into v-tach starting about 180 and ramping up from there!

I did get tricuspid leakage from my wires, but since we were going in to do the aortic valve anyway, we did a repair/support ring on the tricuspid and I'm doing fine since.