Pacing 100%

I received my pacemaker after having TAVR valve replacement surgery. My whole story is in my profile.  At my one year check up this September I was pacing less than 1%. Come mid December I was feeling something in my chest and they checked my pacemaker and it turns out I am pacing at 100% that I went back into heart block. I was totally shocked and devastated! I'm having a very hard time coming to terms with that after I just had celebrated my one year and was doing so well. Anyone else on here pacing 100% and if so any words of advice?  I've been pretty down for the last several weeks.  I scheduled another surgery to move the wire so it's not so noticeable when it's pacing but that surgery scares me as well. 


8 Comments

I’m Sorry

by MinimeJer05 - 2022-01-18 21:46:53

Hello,

Let me start off by saying that I am truly sorry that you are experiencing all of this and that you have to be here posting to begin with. I wish you were enjoying your retirement and not spending anytime worrying about your pacemaker, but such is life. 
 

I can't offer you immediate comfort on being paced 100% of the time. I can note that I had a mechanical valve placed in Jan of 2020 and my pacemaker placed in Sept of 2021 and as of now I am "being paced less than 2%". I say this all because I'm very curious how my statistics will stay or change over time. I have been battling my own vision and motion issues, but I'd like to say that things are getting better or at least stable, definitely not worse. 
 

I can provide comfort in saying that many members here are 100% paced and living mostly normal lives. I'm sure they will chime in and give you that first-hand experience. But until then, just remember that the pacemaker is a tool to keep you going and living your life! Some people aren't as lucky and aren't with us anymore. 
 

I totally understand the depression and the mental toll something like this has on a person -- trust me, we all face these steps sooner or later. All I can say is that I hope it gets better. I'm sure, with time, you will adjust and start to live a more comfortable life. The pacemaker is supposed to assist you, not control you. Just know that it's keeping an eye out on you. 
 

Please do look around the forums and engage with other members. We are all here facing these issues together and together we will strive for greatness!

Take care

Jer

Pacing 100%

by AgentX86 - 2022-01-18 22:22:52

Hi Deb, welcome to the club.

There is nothing to freak out about.  Many, many, of us are pacing 100%, indeed some are dependent on their pacemaker (no pacemaker, no beat). I've had my PM for four years no and have been dependent from the start.  In fact, my complete heart block was intentional.

Sometimes the pacemaker lead is placed too close the diaphragm and will pace it, which is like having permanent hiccups.  There are certainly soutions for this, one is to reposition the lead.  It's nothing to be worried about.

Really, you're not at all unusual.  Being a little freaked is normal but you've had your PM for a year.  Nothing bad has happened, just a little speed-bump.

BTW, I just retired the first of the year, though was on vacation after mid-November. Enjoy! 

Thank you!

by debten - 2022-01-18 22:49:33

I'm having Issues logging in and staying logged in on this website but I was very happy to see that I had a couple comments already!! Thank you to those that have shared your thoughts with me.  It's amazing what a few words can do to make you feel better.   

I saw the doctor last week Monday, January 10 and he tried to reassure me that you can live a long life with a pacemaker pacing at 100% but I have to get pass the mental aspect of it first. Just hearing from others is definitely going to give me some encouragement.   

Thank you again! 

Deb

It Will Get To Be Second Nature

by Marybird - 2022-01-19 10:26:12

Hi Debten, 

I know it's a little jarring, thinking how much we rely on those little titanium friends implanted in our chests for livegiving heartbeats, I remember well how I felt when facing the the thoughts I needed a pacemaker- can you say denial? Or downright terror? 

But fast forward 2.5 years, I can honestly say that pacemaker has been a game changer for me, for the good, with the energy and stamina to do pretty much what I've a mind to do. My pacemaker doesn't pace quite at 100%, at last check it was 94% atrial pacing ( for sick sinus syndrome), but that's pretty much all the time. But I lead a busy life, and when I think of my pacemaker now, it's just to be grateful for what it does for me. 

My daughter also has a pacemaker ( her sinus node was ablated years ago to stop incessant tachycardia) and she does pace at 100%- atrial, and she is pacemaker dependent with a very slow delayed innate heart rate. But that has become second nature to her now, she doesn't think much about her pacemaker as she lives an active life.

That's in addition to the many people here that report they also pace at or close to 100%, but they lead busy active lives too. 

You will get there. I don't know if it might help to think of it this way, I know it helps me. It's still your heart doing the work as it was intended to do, beating, with each contraction. The pacemaker's function is to provide an electrical signal as needed to the atrium/ventricle as needed to initiate that process- but your heart is functioning physically as it was meant to do. It just needs a little help to get the process going, or,continuing, as the case may be. 

My best wishes to you as you go through the process of getting settled and adjusted to the changes that may come. 

Options

by Terry - 2022-01-19 17:11:27

Many whom are paced 100% are now getting their heart paced by activating the native cardiac conduction system (Google that) at the His bundle. Since that is physiological ventricular pacing, it makes no difference to the heart whether it is paced or not. Or, see: <www.His-pacing.org>.

Blessings,

Terry

PM pacing 100%

by TAC - 2022-01-19 20:04:33

Nobody can expect to age without facing unpleasant and unexpected surprises. We have to accept the fact that every organ in our body has an expiration date. After retirement we have to be glad that we didn't die at work. From there on, is a very uncertain road.  Hundreds of medical problems lurk upon us. Since we aren't getting any younger, the likelihood of developing medical problems increases after every birthday. As our organs age, they develop signs of wear and tear and don't function as they used to do. Sometimes, they fail altogether. We usually get anxious whenever we develop an unexpected health setback. I don't get anxious anymore when this happens to me. The reason is that I'm perfectly aware of my mortality and I have accepted death as unavoidable. I know that no one lives forever and that everything in the universe has a beginning and an end. Even the stars that can live millions of years will eventually die. Once, I realize and accept that the worst that can happen to me is dying, I'm no longer afraid of my health problems and try to live to the fullest, aware that I'm in the latter part of my vacation or holiday on earth. Medical science can only help to a point, They can't make miracles. I trust my doctors and try not to compite with them. I avoid becoming obsessed or a hypochondriac because that will rob me precious time.

Pacing 100%

by 21Aquarius21 - 2022-01-27 01:59:39

Hi, i"m new to this group and so glad I found it.  I'm also pacing at 100% after a total heart block following septal myectomy surgery for cardiomyopathy.  It took me a year to get used to having this foreign object in my body and I was very depressed for awhile.  However after two years and a staff of really good cardiologists I'm more comfortable with it.  I do alot of meditating and live by the saying.  I can either start living, or start dieing.  I prefer to start living and really appreciate any time I have left.  It's hard to face your mortality and stay strong, 

Ruth

one hundred percent

by dwelch - 2022-02-01 15:42:56

I have complete heart block, been 100% paced for about 34 years, started at age 19.  Back then was skatboarding vert ramps, bmx, snowboarding, whatever.   Life has slowed down since then but there is no reason whatsoever to be concerned about heart block and 100%.

The only thing to be concerned about is having heart block and NOT having a pacemaker.   heart block is about the easiest thing to fix with a pacer, if you have to have a reason to have a pacer, heart block is on the short list of the conditions you want.

That is probably why they put it in there.

Im not the only one here with a handful/several devices and decades of pacing...at 100%...those of us with CCHB as in from birth, start young and have pacers for life.

You know you're wired when...

You have a little piece of high-tech in your chest.

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