What is your "ideal" pacemaker?

How long do you have.....

by crustyg - 2019-08-30 17:32:04

Hi Emily:

As a keen cyclist, ex-competitive runner and ok swimmer, by far the biggest problem is that all of the PMs currently on the market have a single configuration set - which can only ever be a compromise between all the different conditions of usage.

I can see an easy way in which patients could be given some control over their PMs, and which would still allow our EP docs their sense of being in control - arguably a delusion, but perhaps not.

If you've ever watched Electricity (2014 with Agyness Deyn) you'll recall the old-school neurologist who changes her treatment against her wishes.  Very 1950s.  In most areas of medicine, patients have much more control - doc prescribes some medication and patients choose to take it, or not.  With a PM you get what you are given - and often not by a medically qualified person but an EP Tech.

I don't want to start a flame-war over this - but one of the main reasons for this forum is for folk who are unhappy with their settings, the impact of their implanted device on their lives, their self-perception, to vent and get support from others.  Patients 100% satisfied with everything don't usually waste their time here, except to share a more positive outlook, which is kind and generous of them.

But there's one reason why we don't have any control over our boxes: our docs wouldn't like it...

Afib

by marylandpm - 2019-08-30 17:45:14

   If the Pacemaker could communicate with your iPhone to let you know when you are in Afib and afluter. I.e. turn on Bluetooth. 

Wireless charging

by Teffri - 2019-08-30 19:01:20

I would like to have wireless charging so it didn’t need changing every 10 or so years. 

I’m actually happy so far with the settings on mine. When I first got it the “out of the box” settings felt awful, but I told the cardio technician what I wanted and she did as I asked.

Wishes and hope-nots

by AgentX86 - 2019-08-31 00:20:28

My wish list is short and seemingly simple but evidently not so much.  How about rate response that actually works? 

Hope not - well rechargeable batteries are the pits. They're unreliable and have a low energy density.  Don't even think about going there. In a decade (7.9 years, as of my last appointment) I'm going to want a pacemaker with a working rate response anyway. ;-)

Eye Are ann Elecktrucle Injunier

by donr - 2019-08-31 00:35:17

...and I am happy as a clam with my PM   Except it is not perfect!  I am 83 & aprocuct of the age of the electron tube.  My # 1 son just earned his PhD in EE in 2017, at age 56, & we cannot communicate because he only knows solid state & micro circuits.  The world has changed significantly very rapidly in the field of electrical engineeri\ng - so much so that it is almost approached like quantum physics.    I can recall the days when the 9 transistor radio was a rfeal "Gee  Whiz" device that caused expressions of awe even among the bunch of grad students I was with when shown the device by a Motorola engineer.  None of us were geniuses, but we all had the ability to stretch our imaginations to envision where the electronics world might go, were certain ideas to be made real. 

Let me give you a f'rinstance of a real life example - it happened to me during a final exam in a  graduate electrical circuits exam in 1964.  The questioon was a short essay question (God forbid for a bunch of ewngineers...) , & it went sorta like this:  "Describe a future applicatoin you think possible based on your experience in this course."  Well, I had lost part of my hearing to the .45 pistol on a firing range early in my Army career.  One miserable, scorching July day in 1955 on the range gave me a wicked dose of tinnitus (SP?)  that has kept me from knowing silencew ever since.  I was not yet to the point of nearing hearing aids, but my answer went like this:  I have lost part of my hearing to loud noises.  It is a frequency dependent thing & I need amplification that varies with frequency.  How about a circuit that has that capability?  A micro pad of RLC  components drien by an amplifier wwould do the trick.   Or words to that effect.   I rec'd a wicked "F" for my answer for being outlandish!    Well, today I wear TWO hearing aids that do just that - but they are digital, not analog, and they do a pretty decent job of matching gain to loss as a function of frequency.  The  integrated micro circuiut was just a gleam in someone's eye at that time.

Fast Fwd to 1981 (I think that was the year) I was rattling around in Europe for the vey same Uncle Sam's Army reporting back to the States on things that the  European science world was doing.  I had a small budget to spread around to potential ideas.  I found a very young , new Professor of Physics at a technical university in Innsbruck. Austria.   He had a wild idea about building a device that could generate coherent radiation at near X Ray frequencies.    My memory is a bit fuzzy on the details, but IICR, he wanted to use it to etch very narrow lines in micro circuit substrates.    The technique he was proposing was intellectually feasible.   I brought the proposed project back to the US & pitched it to several high level reseachers to get backing for funding the man.  The response of two of them was  "What use will that ever be?  Who wantgs to go that small?  The man is crazy."  Well that crazy man retired several yrs ago as the head of all electronics physics research i  Austria.

So, don't let convention be a constraint. You may get an idea that is far out, but will pay off some day.

Here are some ideas you might pursue (Finally)

1)  The many settings that may be changed in a PM makes it a nightmare to get to an optimum group of settings.  It becomes a multivariate problem with 5.6,7...variables.  It takes a lot of time to fiddle w/ all thise variables.  There ar a lot of essentially partial differential equtions that must be solved.  Try working on an algorithm that can start small - perhaps 3 variables - & generate a set of optimum parameter settings.

2)  Look at rate  response.  That is a very nonlinear  function as the heart reacts to needs.  It varies greatly from host to host.  Consider an algorithm than can better approximate the nonlinear heart response to rate requirements.   Right now, my Medtronic PM, a product of 2010 technology,  can only do it w/linear approximations.

Donr

Batteries

by donr - 2019-08-31 00:43:41

Emily:  Just posted my comment then read Agent 86's.  I'm w/ him...you do not want a rerchargeable battery - or even one that will last 20 or 30yrs.  The rate at which technology improves would mean that in 20 yrs you would be stuck w/ obsolete devices.  I had a battery expert tell me that you could int=stall a Plutonium powered battery that would last that long.  But you could not get a new tech PM because the medical field does not dhange working devices  just to upgrade your technology.  The old one has to croak before they will replace it.

Donr

batteries

by Tracey_E - 2019-08-31 08:56:27

Count me in the group who doesn't get excited about batteries that last forever. I'm on my 5th and have seen big improvements since my first one. Changes are easy, gimme the newest technology every so often! 

I would like to see all of them have phone apps. Medtronic does now. I would like to have several setting ranges I could toggle between. I currently have my rate responsive aggressive which is great for workouts  but annoying the rest of the time.  I'd sure love to turn it off when I'm not at the gym! 

User-control of the device - we're whistling in the wind...

by crustyg - 2019-08-31 09:25:40

So far, so predictable.

The Number 1 reason why none of the PM makers will bring end-user self-control to the market is because the docs won't buy them / select them / implant them.

I would guess (and this is a wild guess) that fewer than 10% of this forum's contributors had any real say in the make and model of their device, and possibly less than that in the complete installed base.

In the USA, fear of litigation will be the big blocker, elsewhere it's a control issue or cost.

Come on folks - tell me I'm wrong!

You're not wrong but not completely correct, either

by AgentX86 - 2019-08-31 10:04:59

I don't think cost is the big driver.  Most of us don't have any control over what's implanted because most of us don't have the information needed and I would say that (a big) most of us don't even care. I wish I knew before my device was implanted, what I know now.  I'm sure I would have had a lot more input into the device. I sure will next time.

Size

by Pacemum - 2019-08-31 11:13:46

If they could make the size of the pacemaker battery unit smaller but retain the current life span of the battery.  This would make the unit less visible for those who do not have it buried under the muscle and would make it easier to implant in smaller children/babies.  Also a smaller unit means a smaller scar. 

A smaller battery unit would also make it easier for those who wish to undertake certain sporting activities as it would be easier to guard against knocks.

In some respects they are trying to do this with the Micra implantable pacemaker which sits inside the heart but this is not suitable for many patients.

Forget it!

by donr - 2019-08-31 12:18:08

Forget Giving the host contytrol.  Recall that I called irt a muliviable problem to get settings correct.  Mosyt Cardios have trouble manipulating all those variables.  Give any contro; over all thos diffucult to understand parameters & you would have death rates that are astronomical.  Tracey is onto something - give the host a limited number of sets of settings that can be toggled among - they do that with digital hearing aids now.  Mine have at least 4 setngs that I may choose among.  Each has its own purpose - but I use only one of them.  .  I just spent two days in a hospital while my Cardio figured out what very subtle changes were causing me to have many runs of Vtach - all of them non-sustaining, fortunately.  He went through a dozen pages of ECG printouts from a nuclear stress tgest, grabed two sheets and called the Medtronic rep in Atlanta.  They huddled for thirty minutes & he had some subtle change made that has apparently solved the problem.  It's not greed or control that drives the train, it is complexity of the problem.

Donr

Smaller battery would be great

by crustyg - 2019-08-31 12:23:58

I entirely agree about battery size/life.  I have an EL model, currently projected to last 14+ years, which is very nice, if true.  And it's quite large on my thin frame, but no problem at all for an adult male.

Unfortunately we're all (the entire world) waiting for a quantum leap in battery tech - battery capacity has only increased about 25-30% in the last 40 years, and even the big increase in charge/mass ratio as we adopted Lithium hasn't improved the overall charge/size problem.  Almost all of the improvements in battery life for small devices that we probably all use is due to massively reduced current demands from much, much better silicon chips.

The electronics in my PM are drawing micro-amps - literally tens of millionths of an ampere.  It would have been a thousand times greater 30 years ago - milliamps.

I wonder at leadless PMs, but won't comment for fear of litigation.

@Donr: I wasn't suggesting giving any patient complete control over all of the settings, but an ability to select from within a defined set of profiles - exactly as Tracy_E had suggested.  Actually the degrees of freedom aren't as many as you imply - it's not an open multi-variate problem as there are some clear restrictions as you drive towards a goal, e.g. best rate response for dancing, swimming, cycling, running, sleeping etc.  Once you decide which sensor input(s) are relevant and tune them the degrees of freedom are rapidly reduced.  The *big* issue is that most boxes don't provide access to the raw data that they use for their rate response algorithms which makes tuning tedious as there's some guesswork and iteration involved.  But it certainly can be done.

Patient control

by AgentX86 - 2019-08-31 13:58:10

I don't think that's ever going to happen and really isn't necessarily. The problem is the sensor is monitoring something that's only loosely coupled to the need for oxygen. The sinus node monitors blood CO2 which is the inverse of blood oxygen, so not perfect but a pretty direct measurement under normal conditions. I don't believe the measurement of CO2 or O2 is a reasonable expectation but there is clearly room for invention here.

On the other hand ......

by IAN MC - 2019-08-31 15:13:52

My wish is to forget possible improvements in pacemakers as they are a pretty primitive solution to our electrical problems.

I suspect that the next advance will be stem-cell  based regenerative medicines to create healthy functional cardiac cells. These cells will carry our electrical circuits in the way they were intended.

Our grandchildren  ,  and maybe even our children will talk about those quaint outdated things called "pacemakers"

Ian

Ideal

by Violet West - 2019-08-31 17:19:05

1) one that works; and

2) I'm sure this is naive of me, but devise a system so they don't have to cut a person open to change a battery.  Seems barbaric to me.

Stem cell therapy

by crustyg - 2019-08-31 19:56:32

I echo your sentiment, IAN MC.  Stephen Westaby's experience of an infant patient with ACAPA and his desperate surgical excision of a hunk of fibrosed LV and subsequent regrowth of a completely normal myocardium as proved in late teens shows the massive potential of stem cells - where available and in the right milieu.

In 20-50 years time, we shall look back at some of the primitive and barbaric therapies that we used to use - much as we do for some of the things that we did in the 1970s and 1980s - and shake our heads in dismay.

I'm lucky enough to be happy where I am with my box - what I would wish for right now is successful CRISPR treatment for the cystics and then some of the other horrendous non-malignant simple genetic diseases that kill our kids, over 5-25 years.

But patient selection from one of several pre-defined PM profiles would be good and is relatively easy to deliver within our existing technologies.

It's not a technological issue, it's a 'Who is in charge' issue.

Hopefully you’re still taking suggestions

by truocnicole - 2019-09-01 00:03:55

Personally, it boggles my mind that a pacemaker doesn’t exist that can control both high and low rates (within reason). I’ve suffered from severe tachycardia episodes for the last twelve years. Rates would hit over 200bpm, I’d lose my ability to catch my breath and would faint. During my second ablation, I went into cardiac arrest after. This lead them to much deeper testing considering I’m only 29-and there was no other justifiable reason as to why my heart stopped. Following that, my heart was skipping beats, on top of still racing at times. 3 weeks ago I received my pacemaker, followed by a third ablation. The downfall of the ablation is that he couldn’t ablate everywhere he needed to, or it would’ve paralyzed my diaphragm. I’m now left trying to figure out how to function with the tachycardia and potentially jeopardizing myself or others if I begin fainting again. It’s an awful struggle and I wouldn’t wish it upon anyone. 

Stem Cells

by donr - 2019-09-02 02:38:36

Ian:  Not a bad idea!  Dunno what is happening in the UK, but there are two clinical trials being conducted in the US right now on stem cells to repair macular degeneration (Retinal cell malady).  One started last January & another is starting right now.  Reads like they have the ability to become whatever they need to be.  All you have to do is show them the patern they need to replicate Apparently they have the ability to use inature cells from the person needing them, not go to fetus stem cells.  

Lets nor call the procedures "Barbaric;"  Primative is probably a better term.  Think of where all us members of PMC would be w/o the primative PM procedures performed on us.  Met a man working in Home Depot Fridaay.  His wife has an eye condition called Fuch's Dystrophy.   She had her first eye repaired by a full cornea transplant.  Miserable procedure according to him.  Less than 5 yrs later she had the second repaired  by a partial transplant - merely peeeling off the back layer of cornea & replacing it w/a donated layer.   Piece of cake compared to first.  

Donr

Long time user

by NiamhM - 2019-09-02 15:19:48

I've been paced for almost all of my 24 years, and as much as I'm so happy pacemakers exist, they do keep me alive, ideal improvements would be along the lines of:

- Longer battery life

- Bluetooth compatible (for all conditions)

- Non-invasive surgery / only need for 1 surgery site (My pacemaker is now on the right becaus my left side had so much scar tissue)

- More comfortable for it sitting in the chest (especially for ladies)

- More awareness of them being used by young people, and not just as something used by the elderly!

Improvements

by CyborgMike - 2019-09-03 12:52:32

+1 for rate response improvements. Current tech is not very intelligent. Likely will need more/better bio sensors.

+1 for *basic* user controls. Devices could get better/smarter by getting simple. Having a “workout mode” and other basic modes to optimize for activity (like Apple Watch does for various workouts).  

+1 for longer battery or inductive charging. I don’t want a 20 year device, but good if it lasted 10-12 years instead of 8. Good to have an option to extend if needed/wanted.

Also, self learning. The device could use feedback inputs to indicate when it is working well or not well. It could use machine learning to adjust or, at a minimum, provide feedback to EPs.

stop tachys or afibs

by JoanneMT - 2019-09-10 12:32:45

I would like a pacemaker:

which can distinguish tachys or afib, register and stop it.  Even if it is below 150 bpm.

can record heartrhythm for full 24 hours, not only the special/exceptional moments

New to the game, but... my 2 cents

by Ellie_9 - 2019-09-18 05:11:43

I'm new to this so my experience is limited, but here are my thoughts:

- I'm lovin' the stem cell idea. Yes, let's fix the root cause(s)

- smaller devices please! I know there are some tiny ones out there, but they don't have the functionality many of us need. Especially for us tiny adults, smaller would be amazing!

- Convenient visibility (eg, an app [or online portal at least]) into what's going on with my PM and my body. Eg, I was told that my PM would activate if it detected a drop or pause in heart rate OR if it detected low blood volume in the ventricle. I feel it kicking in every day, but I don't know which factor is triggering it; knowing would be helpful for me. **This item and the next are really important. This thing is in OUR bodies. Give us access to info and the ability to adjust, within EP-established parameters.**

- A selection of pre-set parameters we could choose from would be great (or the ability to adjust settings within a range designated by our EP [like when you program your thermostat to allow the kids to adjust the heat but it doesn't let them exceed a particular threshold]) .

- battery: I do NOT want longer battery life (because I don't want to wait 12-20 years for an upgrade)