Help with Adjustments

I am in US/California. The nurse at the pacemaker clinic only checks that the PM is working properly. The only settings she will discuss are the upper and lower limit, and those are only changed with approval from the cardiologist (60/150).

I called Boston Scientific to ask if it is standard practice to lower the voltage after a few months when the leads have scarred down, and was told yes. The nurse won't adjust this (not sure if "voltage" is the right term). I feel the pacing. It's been 8 months and I hate the feeling. This is just one example  

I read about "EPs", but I don't have one. I don't know if Kaiser even has them. Any suggestions for how I can advocate for some fine tuning? I don't feel that I'm being heard. 



by AgentX86 - 2023-03-13 23:51:15

There really isn't any need for an EP if you don't have a fairly serious arrhythmia.  Otherwise, a cardiologist, preferably an "interventional cardiologist" will be able to take care of you and your pacemaker. 

I have no idea why the "nurse" won't make other settings changes unless she's not qualified as a pacemaker technician (not just anyone off the street). Mine has a CCDS (Certified Cardiac Device Specialist) certification.

Definitely there should be adjustments to the voltage (technically the capture and capture margin) shortly after implant and periodically after. Depending on your condition (reason you have a pacemaker) there are other adjustments and tests needed periodically.

Yes, upper and lower rates would need direction from a cardiologist but there are many things a device tech can do with only oversight by a cardiologist or EP.  My PM settings are reviewed by a EP (who I haven't seen in five years).  That's how they get paid. 😁

Back to you.  I'd escalate the issue.  You really do need some real care not just someone to look at you to see that you haven't turned blue. I know it's not easy to replace you're doctors with Kaiser being an HMO rather than PPO.  Kaiser seems to be either really good or really bad. I'd be pushing the issue and wouldn't give up.

Voltage adjustment

by Rch - 2023-03-14 02:44:13

N.Cal Kaiser has half a dozen of EPs at the the Santa Clara faculty and S. Cal has quite a few at the Sunset facility. They are mainly available for consultation over the phone for the Cardiologists but otherwise they are always fully booked with the EP studies, ablations etc. Most Kaisers have invasive Cardiologists to do the implants and the device techs to do the follow ups. All Kaiser ERs have company reps on call 24/7. So, if you request, your device tech can arrange an appointment for you with a representative. I suggest you request an appointment with the Cardiologist who implanted your PM first. 

That said, most capture or sensing threshold voltages are programmed by your pacemaker itself. However, if you would like to override the programmed voltage, you could discuss that with your Cardiologist. Hopefully you will get an answer soon! 


How to advocate for some fine tuning?

by Gemita - 2023-03-14 07:13:21

Snowlover, I recently successfully made a strong case for turning off one of my settings and this led to finer adjustments of some of my other settings too.  I have to say from my improved symptoms so far, I feel confident that my “suggestions” have at least caused no harm.  But it hasn’t been easy for me to understand what is set up in my device and how the device Settings could affect my arrhythmias and symptoms.  It has been an even longer process for me to learn how to speak to my Cardiologist/EP here in the UK about these very technical issues.

My advice is to find out as much as you possibly can about any Settings or symptoms that you feel need adjusting/addressing.  With these facts, you can then find a cardiologist/electrophysiologist (my consultant is both) who is willing to listen and to support you.  You will hopefully know instinctively when you have found such a doctor you can work with.  

A well informed patient is usually listened to, particularly if we approach any subject in a “respectful” manner.  However our doctors also need to be listened to as well (as one member kindly reminded me), especially if we trust them and work well with them.  So remember to actively listen too.  I don’t do this enough, so often come away without all the answers.

Remember a “one size fits all approach” will not work with our Settings since we are all unique and have very different health conditions, requiring individual pacing adjustments.  Implant healing times will be different for each one of us too, although at 8 months you should be well healed by now?  During any healing period doctors may be reluctant to change our Settings or to change any other therapies (like our medication).  Clearly though your acute symptoms from a high voltage Setting should now be addressed to enable you to feel more comfortable.

I hope you receive the care you deserve and that you will find a way to effectively communicate with your medical team.  Remember to always believe in yourself and prioritise your needs, since no one knows your needs better than you.

Recognising a Good Technician

by Penguin - 2023-03-14 08:29:51

 An excellent technician who I used to see explained to me that good technicians 'listen and respond to the patient rather than solely looking at the data / device '.  That's my definition of compassionate, attentive and knowledgeable care.  These devices do a lot of good, but they are not human and with unhelpful programming they can also cause unpleasant symptoms. In my experience what you feel as 'wrong' or 'uncomfortable', is usually borne out by some setting or other that needs to be adjusted to suit you better.

Voltage can certainly make a significant impact on your comfort levels and at the very least it will be noticeable particularly when you first have a device implanted with voltage which is too high. As far as I know voltage should ideally be applied at the lowest possible rate to stimulate the heart.  Whilst I respect what others are saying about higher voltage being applied initially, if it's too high you will be very uncomfortable indeed and 8 months later this needs to be addressed.  If you can feel it being applied as painful, 'shocking' or uncomfortable, that is not right.

Go back to your clinic and explain what you have told us here and persist if necessary.  You should be listened to. A technician should be able to sort this out for you with a simple adjustment.  I've had mine adjusted by technicians on 2-3 occasions - but I've fortunately  been able to identify that increased 'voltage' may be the issue and have spotted upward revisions of certain settings. 

You're not in that position yet, but you will learn about your settings in time. In the meantime this is a basic settings change which (IMO) your clinic should deal with for you promptly and compassionately. 

Thank You

by Snowlover - 2023-03-14 10:14:09

Thank you all for taking the time to respond. I know in there are much more “serious” cases than mine, but I do deserve to feel comfortable. I would love to learn more about the various settings if anyone has any good suggestions for where to look!

Manufacturer manual would be a good start

by Gemita - 2023-03-14 11:01:06

Snowlover, you could start by downloading your Boston Scientific manual for your model of pacemaker where you can read all about the features for your particular PM.  Additionally, consult your pacemaker clinic (by email/phone), or manufacturer if you have any specific questions relating to your settings, or search online for Boston Scientific specific settings, what they do etc. and of course come here to ask questions, since many members have Boston Scientific and can guide you.  Take your time and learn well

What everybody else here said

by Persephone - 2023-03-14 17:19:05

Hope you're feeling well, Snow. In my own experience, my clinic staff seemed to have very little experience with the brand of PM (biotronik) when implanted 5 yr ago. They did eventually step up and start regular visits from the biotronik techs to teach them and join in meetings with patients, but it was quite frustrating at the beginning. Since I had no baseline I didn't know if I just had to accept that "this is the way it is" or consider moving to a different practice. Hang in there and keep advocating for yourself!

Kaiser device nurse

by ourswimmer - 2023-03-15 20:48:52

I endorse everything Rch told you. Your cardiologist or surgeon or both probably did consult with an electrophysiologist about you, and can again. The device nurse can set an appointment with you and the Boston Scientific rep. I recently set up such an appointment just by exchanging some email with my cardiologist through the Kaiser secure email system.

Over time, threshold and other parameters do need to be rechecked and readjusted if needed

by brady - 2023-03-16 19:14:42

I had 4 followups and I hope my experience could be useful to you. But my PMs are in clinical trial so the experience may not be that useful.

In each of my last four follow ups, the Abbott engineer did thoroughly check all the parameters, and definitely they should be all checked and re-adjusted if needed. Otherwise it is not a followup.

The checking is automatic and is done by a program in a small carry case.  At the end of the checkup, he would give me a printout listing all the parameters of the PM. Below are same of the parameters the program checked:

1) Threshold voltage (also call capture threshold): minimum voltage to cause the heart to contract. Typically < 2V (actually it is the minimum energy). Characteristic of your heart and is not adjustable. >2V is bad news, very undesirable.

2) Pacing voltage: voltage from the lead to cause the heart to contract 

Often set to twice the threshold voltage to give a margin in case the threshold voltage fluctuates. The pacing voltage definitely needs to be readjusted because too high will shorten battery life. My initial pacing voltage was 2.5V and now is 1.25V, which prolonged my battery life. <2.8V is good because the battery output is typically 2.8V.

3) Time window of the pacing voltage

The pacing electrical pulse is a spike over a window.

This should also be adjusted. Too large a window means too much electrical energy and some of which is vwasted shortening battery life. My window was adjusted from  0.4ms to 0.2ms.

4) Sensitivity: below which the electrical signals will be ignored.

5) Rate response parameters

Rate Response  also need changing as you learn more how the PM responded when you walked and exercised. Fine tuning is necessary.

Others are just for information, not adjustable

6) Remaining battery life

7) Impedance

8) R-wave amplitude, etc

The person who has in-depth knowledge about pacemakers is the EP. It is beyond the nurse. It is OK for the nurse to change a parameter, but the decision has to come from the EP. Cardiologists normally won’t want to deal with pacemakers and would ask you to go the EP. If you feel a parameter need changing, EP is the person to talk to, not the nurse.

If you are only allowed to talk to the nurse, I would suggest changing your EP. Also do get a printout for your record.

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I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.