Do you ever forget you have a pacer?

I have been thinking about something a pacemaker nurse said when I continued to have pain at 4 months after insertion. She said many people forget they even have a pacer. I didn't believe it then, and I don't believe it now. 

I still feel the pacer every day, especially if I do something strenuous, sleep wrong, or get too cold. I see the big lump on my chest every morning, I see the visible veins across one side of my chest, and can see that my arms are different sizes and colors. I feel my belly twitch about 60 times a minute if I if I sit with my knees drawn up. 

For those of you have had your pacer for at least a couple of years, do you ever forget you have it? 

I am not looking for pity here. I definitley feel  better with than without the device. I am just curious if you ever forget you have one? 


17 Comments

Much of the time I'm unaware of my PM

by ar_vin - 2021-03-23 02:02:29

My PM was implanted in September 2018 for sick sinus syndrome. It did take concerted effort on my part to get the settings tweaked to match my activity levels over a period of 6-9 months post implant. It also took a significant effort to get myself physically conditioned to  perform at the level I was at around the time of my first symptoms/diagnosis of my sinus bradycardia. I'm probably in better shape now than I was before first feeling symsptoms from sick sinus syndrome (low heart rate, chronotropic incompetence,....) 

If you feel all of what you posted it might be that you need to have your PM settings adjusted or have yourself evaluated in case your underlying issues haven't been correctly diagnosed or treated.

One other thing: my PM was placed sub-pectoral under the muscle at my request to my EP. So it's not at all prominent but it is visible!

 

 

4 months after....

by amanda_shanti - 2021-03-23 02:57:20

Yes, I forgot about my pacemaker sometimes (not that I completely forgot I have a PM but more like it slipped out of my mind) and I had my pacemaker implanted only 4 and a half months ago. I also doubt that I would ever forget my pacemaker at the very beginning of my PM journey, but now I knew it's true when people said they forgot about it. 

Of course I still feel it, especially when I move my left arm in certain angles or lying down in bed. (I overprotected my left arm and now have a frozen shoulder...a mild one maybe, not that extremely painful but still suffers from some pain and difficulty when moving my arm... sad). However, I don't aware of my PM 24/7 now.

Also, I believe the setting of your PM may also make you aware of it all the time and have some sensation in the body, like chest, throat and belly. I remember I felt some strong sensation in my throat but it's gone after I discussed with my doctor and had some setting changed. (Sorry I'm still new to this thing and not sure what my doctor/PM tech person did to my setting). You may talk to your doctor/PM tech person in the next follow up session.

What Scar?

by TomL56 - 2021-03-23 07:36:25

Over the past four years, I have often forgetten that I have a PM. I am pretty good at not thinking about things that bother me. 

Many times I will get an itch on the skin over the PM and as I scratch it I think WHAT THE HELL IS THAT? I took my shirt off in a hospital and a nurse asked me what is that scar? And I honestly said WHAT SCAR?

In the beginning having a PM is a big deal. It's an invasion of your body. But after a while it just becomes a part of you. Something that keeps you alive.

Hang in there and try to relax about it. I promise you - it gets easier over time.

 

Which pacemaker ?

by IAN MC - 2021-03-23 07:38:06

I can honestly say that I never think about my pacemaker.

I don't ever think about the fillings in my teeth either, or the replacement lenses in my eyes following cataract surgery.

Life is too short to think about all the bolt-on extras that we acquire !

Ian

Remembering

by Persephone - 2021-03-23 10:59:50

Hi Julros - thanks for asking this question.  While I was stunned to learn I needed a PM 3 years ago and had little time to try to begin to understand what it all meant, most thoughts that I have now that could be consdered on the negative side are about how bad I felt prior to implant - certain events bring back those memories.  Fortunately I can conquer these thoughts with the awareness of how wonderful it is to have this chance to feel well again, even though things are of course forever different.  I hope you are feeling better with each new day.

no notice of pacemaker

by new to pace.... - 2021-03-23 11:06:39

I've now had pacemaker since Aug 2019, do not feel it unless i brush against it.  Sometime i do put my hand over just to make sure still there.  Do try not to use that part of my body to carry anything against it.   

Now glad that i got it as i do not fall anymore.  Which at times would fracture something.  Was just told it was because of the slow heart beat.

They used surgical glue to close the incision so virtually no scar.  Which i  can  not see anyway unless i look in the mirror.  Anyway now have a matching scar  on the right from shoulder replacement.

new to pace

Pacemaker?

by AgentX86 - 2021-03-23 14:10:17

Oh, so that's why I'm here!  No, I don't often think about it.  Just at the top of a couple of sets of stairs when I get a bit winded, perhaps.  Other than that, I don't think of it any more than my bellybutton.  I know both are there, and why they're there, but I don't contemplate either.

Navel contemplation

by Persephone - 2021-03-23 14:56:50

Nice analogy, Agent :)  Gives one pause for thought.

Thinking About Your Pacemaker

by Marybird - 2021-03-23 16:56:25

Depends on what I'm doing. I don't think of my pacemaker when I'm busy or have anything else to think about, which is most of the time.

When I do think about it ( sometimes happens when I feel the flutters/ flip flops of the tachyarrhythmias that visit me sometimes), it's with wonder and gratitude that such technology is available to me and has improved my quality of life so much. 

Like Ian mentioned, I don't think a lot of the artificial optic lenses that replaced my cataract- ridden natural lenses a number of years ago, either. But I do think of them sometimes when I look out over a scenic vista ( like my back yard), or wake up able to see clearly with 20/20 vision, and I'm grateful for those as well. 

I don't think much about my belly button, though. I can't think of all that much it's done for me lately, lol. 

 

all the time

by dwelch - 2021-03-23 20:19:01

I have had pacers for 33 well 34 years here real soon.  Yeah I often forget not just becase I have had one over half my life, but you just forget, then when you bump it or see the scar or whatever you remember.  That doesnt mean you forget for weeks on end, but most of my day I dont remember and maybe there will be a day or two here or there I dont think about out or bump it or see it...

I have a belly button too and I dont think about that all the time either.  Nor my middle toe unless I kick it against something, I have two of those.  It becomes like a toe or belly button you know you have one but you stop thinking about it...

 

Thank you for your replies

by Julros - 2021-03-23 21:57:02

Ha, ha, I don't think about my belly button, but then again, it doesn't ache every day, nor does it protrude from my abdominal wall (except when I was pregnant). 

I have worn corrective lenses since I was 3, so I guess that would be a closer analogy for me. They are rather expensive, need frequent adjustment,they hurt when bumped, and yet I need them to function. 

Corrective lenses

by AgentX86 - 2021-03-23 22:41:32

...but I've never forgotten where I put my pacemaker.

Or Had Somebody Point Out You Left It On Top of Your Head

by Marybird - 2021-03-23 23:30:48

That'd be a hoot, wouldn'it?

Let us keep it where we can see it !!

by Gemita - 2021-03-24 07:42:56

Now let us put some order into this amusing thread.   Boring I know!!   But that is me.  Some implant procedures clearly go better than others and depending on the level of trauma we sustain we can expect a longer or shorter period of healing.  Julros you sound as though you have had a rather traumatic procedure resulting in collateral vein formation.  It is bound to take longer to heal in the area.

After three years I feel my pacemaker less, but I certainly know it is there and I certainly feel some activity in the collateral veins which I never had before my pacemaker was placed.  The collateral veins extend around the pacemaker, into my left armpit, upper left arm and all the way down my left breast and when blood flows poorly, say during an “irregular” arrhythmia episode, I certainly feel the ebb and flow of blood in these poorly formed veins!  Does that answer your question?

But on the whole everything has settled down nicely and Julros at almost three years, yes I can say most of the time I do forget I have a pacemaker especially when my mind is fully occupied and I am fully engaged in my activities.  

Four months is still early days.  With each passing month you will feel your symptoms less and less.  But aren’t we all different as this thread clearly shows but at least we don’t have to worry about losing our pacemaker unless it decides to migrate to an unknown location, then we would really be scratching our heads

It’s definitely there, but it’s part of me now.

by asully - 2021-03-24 14:12:36

I am quite thin and petite (well at least my upper half, I am sure some of the other women on here can relate).  I have an abdominal implant, it sticks out a ton!  My new device is a crt-p and quite larger than my older one and much more noticeable (if I could post a picture I would).  Most days I don't think about it, but if I bump up against it, or I wear a bra with wires they kind of jab into it.  Mine is really awkwardly placed though where my rib cage pushes it out.  I consider it part of me now, it doesn't feel foreign.  However, I like to gross out my friends and family by making them touch it lmao.  It freaks them out 1,000 times more than it ever did me.  The doctors and techs always go looking for it on my chest and get baffled when they can't find it I usually let this play out for a minute before I tell them where it is.  The look on a doctors face when your pacemaker has "disappeared" is priceless.  I would say the thing I notice most is below my clavicle where they tunneled down my atrial lead when I was upgraded, the wire kind of pokes out (not through the skin of course) and if it gets bumped or rubbed against the area can get sore.  Anyways, it gets better IMO with time for most I think.  I spend more time focusing on my hairy moles than I do my pacemaker.

my first one

by dwelch - 2021-03-28 23:58:47

already posted, but my first one three decades ago was huge, not as huge as some that are posted in the pictures (from four decades ago), but quite a bit larger than todays, and I was skin and bone then it stuck way out there.  I forgot about it as much then as now, I had not learned to protect it, subconsciously, was bumping into it, etc.  Somehow, pretty sure I remember when, I moved it so much one of the leads/wires went under and over the top, so I had the lead visibile on top of the device, doc was worried about the skin over the corners being a problem, but I made it through that one...

No doubt our experiences are different, our surgeons are different, our bodies are different.  the device is well worth having.  If this first device is bothering you then can go back in, that is technically possible. but you may need to just ride it out (yes for years) and in that time find out if possible if it was you, the device, the surgeon, how/where, etc.  What can be done on the next one to relieve this discomfort, etc.  

 

nope!

by PacedNRunning - 2021-04-05 00:24:53

I have never forgotten about my PM. I have forgot about it during the day but I wake up every morning thinking I have a pacemaker!! Wow! There is nothing wrong with remembering you have one.  You don't forget about your pets? your cell phone or anything else.

You know you're wired when...

You have an excuse for gaining an extra ounce or two.

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