Has a Pacemaker weakened or strengthened your heart muscle?

PATIENCE

by Gemita - 2019-12-29 07:52:35

Hello Johnny63,

I have read both your posts and am delighted you have had such a positive outcome.  I too have had an improvement in my overall quality of life since my pacemaker was implanted and I feel sure this is because my heart is now supported and ticking away at a steady rate (70 bpm) whereas before it was flopping around and often crashing to levels low enough to affect blood flow to my vital organs, including my brain, which often resulted in instability (and faints).

I am fairly new to all of this too.  My pacemaker was implanted in May 2018.  I have a perfectly normal heart apparently but the electrical system has gone crazy.  I suffer from both bradycardia and tachycardia and have several arrhythmias, including AF, Flutter and non sustained Ventricular Tachycardia.   All these rhythm disturbances have greatly improved since my implant, so much so that I am now only on minimal medication.  I am slowly finding out about pacemakers, settings and how to make the most of my appointments with my doctors and the sort of questions to ask.  In my particularly case, I wanted to know whether any significant arrhythmias had been detected, maximum heart rate detected, percentage time in a particular arrhythmia, whether battery and leads appeared sound).

It is important that you let your doctors know your level of activity and what you hope to achieve so that your pacemaker can be optimized for your lifestyle.  But this maybe a slow learning process, so don't rush this important step.

Try to download a copy of your model/make of pacemaker which will give you so much information on what is programmable and what features it has to offer.  When you next go to have a pacemaker check, you could ask whether you could have a “full” copy of your downloaded “interrogation” data.  They may share electronically if you ask.  They may not be happy to give it to you on the spot unless you have officially requested it beforehand (at least not here in the UK).  Armed with this information, you can study what has been set up for you and study the pacemaker manual for a full description of your pacemaker’s modes, settings and so on and if you can’t make any sense of something, you can post a question here.  We have got some excellent PM technicians on this forum !!

My ejection fraction needs to be assessed at my next appointment, but because my heart is at peace (in normal sinus rhythm most of the time), my doctors are not expecting to find any deterioration.  How “we feel” is the most important indicator to test how well our pacemakers are working for us.  And like you, I am feeling so much better so I will not mess with what is set up at present.  

So move forward with confidence but be patient with your progress and be happy to build up your strength and knowledge slowly and securely is my best advice.

Patience

by Johnny63 - 2019-12-29 14:17:17

  Thank you for such a through and thoughtful  response. I am happy your health has improved so favorably with your PM as well.

  What is most obvious to me is how little I know about the capabilities and possible side effects of the device that has been implanted to regulate my existence.

 All your advice was great. I will learn more about the specific capabilities of my PM and I will have to be patient because the subject matter is complex and seems quite overwhelming presently. 

  I remember wondering if I was making a mistake when I agreed to proceed with the PM so quickly; however at the time I felt like I didn't have much choice. I remember wondering if, as soon as the PM was implanted, my heart would just give up and turn things over to it. 

  What I am wondering, after the small amount of reading I have done, concerns whether a Dual Chamber PM is ideal for me, or would a Bi Ventricular one be better. I have read about heart function decline after the implementation of a Dual Chamber PM. I feel like the good health of my heart muscle was the main thing I had going for me since I went so long with normal functioning and without symptoms even though things were probably deteriorating. For example, when taking my pulse over a period of weeks following an incident with pulmonary emboli 2 years ago, I remember thinking my heart was occasionally skipping a beat. I just ignored that then. 

Does anyone know what the chances are that my current ejection fraction of 65% will stay the same vs declining with a Dual Pacemaker which is what I think I have. I remember the PM representative told me the upper chamber of my heart was working 93% of the time on its own and the lower chamber was close to 100% dependent on the PM to function.

  Naturally, I prefer to maintain my heart muscles good condition presently rather than waiting until my ejection fraction declines to make a change to then try and restore it.

  Also, how much might exercise help me preserve my hearts strength if I continue with a Dual Chamber PM? 

JUST MY ADDITIONAL THOUGHTS

by Gemita - 2019-12-29 15:56:17

Hi Johnny,

I see you have posted a third time, so I will leave others more knowledgeable to answer your specific points.  Personally I feel that your doctors would have chosen the most appropriate PM system for you at this time, particularly in view of your excellent EF.  I also note that you appear to have a dual chamber PM and that your upper chambers are working well on their own.

I too have a dual chamber PM which more closely matches the natural (physiological) way my heart should work.  I am being paced close to 96% upper chamber, with minimal lower chamber pacing which is very good.

I was told that with pacing predominantly in the "right ventricle alone" this could cause left ventricular  “dyssynchrony” and potentially lead to heart failure symptoms in some unfortunate patients, particularly in patients with depressed left ventricular ejection fraction at the start of pacing.  However, your EF is very good, you have ?dual chamber pacing? and you are feeling well at the moment, so this is all a positive sign.

I would seek an early appointment with your doctors and ask them these searching questions because clearly you have concerns which have not been fully addressed.  In the meantime, I hope others can reassure and advise you.   Whether placement of a third lead to your left ventricle as a preventative measure to protect you against the potential for heart failure in the future is really warranted is questionable at the moment, particularly with a normal LVEF, since there are clearly risks involved in additional lead placement.  Good luck

Thank you

by Johnny63 - 2019-12-29 16:21:23

Your advice is very helpful. I am receptive to any perspective other members may have. 

take it easy

by dwelch - 2019-12-29 21:23:48

Welcome to the club!

You need to take it easy.  The docs know what they are doing.  

I have complete (level 3) heart block, from birth, my whole life basically.  complete congenital heart block, there are at least a couple/few of us here with that.  Whether from birth or not level 3 or complete heart block is an easy one both to see on an ekg, and to treat with a pacemaker.  

So from my experience.  If you dont treat heart block or let it run for a bit, your upper and lower chambers are marching to their own beat.  Inneficient they arent filling at the right time are fighting each other, heart has to work harder to do the same job, so it gets bigger and the heart muscle thicker.  Was diagnosed pre-teen and watching the size of the heart, the heart wall, etc and perhaps the doc wanted to get me closer to full grown, who knows, but first pacer at 19.  I am on pacer number 5, 32 years give or take with pacemakers.

Most recent one was my transition from two lead to three lead. Because my EF got too low.  They had been watching my EF for a decade or two.  Its something that MIGHT happen 15 years or so in and that doesnt mean a step change, it is a very, very, very slow process. 

You dont want to rush these things, you are on number one, barely into number one yes?  You will have a lifetime of these things.  Might wear out or break leads, etc.  You dont want any more equipment than necessary.  Doc broke a lead on the first replacement, so I have a 32 year old lead and a 25 year old lead, and a 32 year old broken lead that is capped off.  Then the latest device got a fourth lead, big guy, room for four, all good.  Three different brands of active leads, have had the major brands of pacers, medtronic, st jude, boston sci.  

The pacer for you/us makes the heart work better so the muscle and size if it had been enlarged I assume returns.  I could see my heart beat between my ribs pre-pacemaker (was quite skinny then) and could feel every beat, was just a normal part of life, that went away with the pacemaker.  

From what you said with a handful of percent upper chamber and 100% lower, that indicates you are probably level 3 and needed this device.  So much nicer to not have to worry about the heart block and your heart in general.  In our case the pacer is working all the time, that does not mean the battery runs out faster they simply put a bigger one in to start with.  Our devices are bigger than some other folks, my first one was huge compared to todays.  Note, get a printout of the report whenever you go in and ignore whatever the battery life says until the units are in weeks or a small number of months, and can ignore it then too because the doc will finally say we need to plan for the next one.  

As you get used to it when they do the test there is a race the heart test there is the elephant sitting on your chest test.  That one or another one that feels like your pace dropped off is when they stop the device and examine your underlying rythm.  Just because we are 100% IMO does not mean we are dependent, although the use of that word varies.  Our hearts kept is going without the device, and in a pinch will continue to, not if you run a marathon without the device of course.  No need to worry though the device has a few month safety period, locks your rate at something like 65, which you will feel, your heart wont react to activity for that period.  You get winded doing normal stuff.  but I am now getting you worked up you have like 10 years give or take to worry about this and not all pratices/insurance companies force the safety period.

It is good that you are researching and learning.  But understand of the conditions you could have this is one of the good ones, easily fixed by the pacer.  Life with a pacer is easy, you forget it is there lust like your belly button, you just dont think about it (once you transition through the normal anxiety period).  Tracey_E who you will see on these pages more than most folks, has CCHB, lots of research and knowledge on the topic, you are in good hands.  Other folks here too with lost of knowledge and experience, and then there is your doc.  

So no worries about heart muscle, maybe late device two, early device three ask about it.  No worries about EF, same answer.  Just enjoy life without having to worry about your heart, you can do things you couldnt do and/or can do things safely you use to do (I should have died, period, those years before the pacer, was a stupid teen (not that I am any smarter now)).

Welcome to the club.

Thanks

by Johnny63 - 2019-12-29 21:44:10

Great response, I appreciate the concern. I am glad you have been doing so well for so long and  are willing to take the time to explain things.