Mentally having a tough time after having a pacemaker installed

The mental scars often take longer to heal than the physical wounds

by crustyg - 2023-06-20 11:59:37

I don't want this to sound trite or glib, but it really is true that the mental impact is often much worse than the implantation etc.

I suspect that the more of your sense of self, your self-image, is of an active, possibly athletic person, the greater the mental shock, especially if the PM was an emergency procedure.  At least I had nearly a year to get used to a device (and nearly 6months of asking for one...), and it still hit me hard.  For me, it was the realisation that someone else would be in control of the device - and hence my return to athletic life.  Turns out that charm and persuasion was the answer for me.  But the occasional ache and twinge upsets the mental equilibrum, and I even convinced myself that I'd pulled a lead out around 2months in and ended up as an inpatient for 24hr (raised troponin).  What an embarassment.

I've had issues all of my life: what works for me is Cognitive Behavioural Therapy - CBT.  Simply put you focus on the things that you want to make happen, the positive things in your life, and suddenly you realise that you haven't had a negative thought, a worry for a day - then two days, then a week.

And forgive yourself: blaming yourself for an illness - whether justified or not - achieves nothing (unless you're a smoker!).

Best wishes.

Sounds normal to me

by Theknotguy - 2023-06-20 12:15:08

I was on a hiking trail with two dogs.  Turned the corner to go on the exit trail, everything went black.  Woke up nine days later with a pacemaker.   Talk about surprised.  

I think it was nine months before I got out of the car, walked across the parking lot and didn't think about my pacemaker. I think it was about that time that I quit worrying about whether the pacemaker would continue to work.  Add in a few things that happened that convinced me it would continue to work and I got a lot more confident about the unit. Now I'm on my second one.  

I'd get a twinge or some activity (like a racing heart) and would wonder if it was the start of "the big one".  Total recovery time was two years mostly due to being beaten up when they did CPR.  Busted ribs, collapsed lung, multiple bumps and bruises.

What you are going through is normal.  What doesn't help is the EP sees about 300 people per year so it's no big deal to him/her.  Nurses only care about getting you out of the office/hospital and don't learn any more than what they need to know.  Most  "normal" people haven't a clue.  Other pacemaker people want to talk about themselves. A lot of incorrect information gets repeated over and over so it's hard to tell the  facts from the fiction.  So, yeah it makes it really hard for the newbie.  Then add in people who delight in telling you scary stuff because it makes them feel superior and it's a mess.  

What I did was to start gathering as much information as I could about pacemakers. I spent a lot of time on the forum and asked a lot of questions.  I went from thinking about my pacemaker almost minute to minute to going weeks without thinking about it at all.  Now I have to remind people I have a pacemaker in case I'm asked to do  something I shouldn't do.  

I go in for checkups now and I'm sometimes telling the nurses what needs to be done next and not to get worried about some things. 

I'll tell you to hang in there.  Your body heals at it own pace and things usually get better over time.  It's a lot better being alive than dead and life is a lot better with the pacemaker than without.  

My best wishes for your recovery.  

Hi Brad! Welcome home💗

by Lavender - 2023-06-20 14:12:52

What you're describing is a familiar story around here. I fainted for six months before a heart monitor caught my rare arrhythmia-ventricular standstill. I have AV and left bundle branch block. I'm 100% dependent on my CRT-P device. 
 

My personality changed for a long time after getting the pacemaker. I'm a naturally social butterfly, bubbly outgoing person. I became fearful and reclusive. I was happier at home. I felt safer not driving alone. I was uber self protective. 
 

What helped me was meditation, massage, listening to headphones with music. A psychotherapist told me to listen to youtube meditation by Michael Sealey. I grew addicted to healthy natural foods, diaphragm breathing, and peaceful interludes. I took a daily nap. I totally gave myself permission for rest and recuperation. 
 

That was two years ago. Now you cannot pin me down. I'm on the go. I'm the contact person for my high school class-planning monthly lunches and annual reunions. I'm busy with grandkids, outdoors stuff and family events. Life is better now that I'm trusting my pacemaker. No more fainting. 
 

Give yourself time. It's going to get better Brad!  Lots of living left to do even if not all the body parts will do what you want from them. Do what you can! Right now you're hyper aware of your heart. Soon your brain will ignore it and shut off the Danger‼️sign. 

Mental adjustment

by Gotrhythm - 2023-06-20 14:49:22

Sorry you're having a hard time, Brad. Most of the members here will tell you that the mental adjustment to having a pacemaker is a lot bigger than the physical one. Fortunately we are an almost infinitely adaptable species, and the day will come that you will trust the pacemaker to do its thing, while you get busy and do yours.

I have surprised myself at the number of times I've been filling out a medical history and completely forgotten to list "pacemaker."

In the meantime, consider consulting a therapist. Just having someone objective to talk to and help you sort real world concerns from the "But what if" worries helps a lot.

And of course, remember that you can always come back here. As often as you need to. Knowing that other people are having or have had the same mental hurdles will put things into perspective for you. Ask for coping strategies and you'll get lots and lots of suggestions from people who have "been there."

Imagine, if you will, the day when you will respond to someone else's post. You'll tell them that you know how they feel and promise them it will get better.

One more thing. In the header at the top of the page, in the far right corner, you'll see what looks like a letter Q. Click on it and type in anxiety. You'll quickly see that many, many others have dealt with the same things you are dealing with.

Don't Worry Be Happy

by doublehorn48 - 2023-06-20 18:04:33

38 years ago for about 3 weeks I had been having trouble breathing. It had gotten so bad I had finished loading a furniture van and was scheduled to leave Monday for Az. I got to our apartment Saturday evening and had picked up my youngest daughter, Sarah. I started to cry. I told my wife I wouldn't see Sarah  turn  20. We got in the car and drove to the ER at Yale New Haven. The doctors implanted the first dual chamber pacemaker they had ever seen.  I was back on the trucks a couple of months later. I never felt anxious or worried about my pacemakers. Just thankful that I could go back to work and start providing for my family. Pacemakers are very dependable. My first cardiologist told me they had me back to about 90%. And after all these years I think he was slightly conservative. I'll die someday but it won't be the fault of my pacemaker. Today is June 20. I have 2 grandsons  that share a birthday today. One is Sarah's youngest child. He turned 5 today. Happy birthday, Jaxon!

Like the song said, Don't worry be Happy,

m. scott

But what if?

by 73Rawk - 2023-06-23 01:00:39

Hi Brad,

Welcome to the club! I had my device (Medtronic ICD) implanted in Feb this year after two SCA's a week apart, the second, in hospital, just prior to undergoing a PET scan to determine my route cause. I obviously had someone looking down on me from above. The mental hurdles are the toughest I've faced, going from a perfectly healthy indiviual (non-smoker, non-drinker, non-narcotic dabbler) to being mechanically assisted daily.

It's taken some time to be comfortable in my own skin again and being able to trust the device has my back. I've recently 'partially' returned to performing live as a drummer and have found my stamina lacking but it felt great to be amongst it again and working towards a full return. My wife and I have broken down my recovery to a series of milestones and with her help I've managed to move forward time & time again. Even so, the idea of 'But what if?' creeps in which is often counter productive to healing. Mostly I've been able to quell this feeling but it is not easy all of the time. Especially when I can feel that my heart is racing for no apparent reason while I'm 'at rest'. 

The main take home is that we are alive and may well not have been without our new little friends. I wish you well in your journey and you will find so much support here.

Take care.

36 years

by dwelch - 2023-06-28 03:13:29

It think this year is 36 years with a pacer, device number five.

My story is a bit abnormal.  I have complete congenital heart block, as in from birth, but back then they didnt look for this, pacers will still not quite mainstream.  found as a pre-teen. Cardilogist kept an eye on me for a number of years before device number one at 19.  At least from my teen brain understanding at the time his concerns were the size of the heart, he had this early ultrasound type device he could measure the heart wall and see the valves.  

By the time I got number one my heart was so big that you could see it beat between my ribs (I was super skinny then too).  I didnt need to put my finger on my neck or wrist to take my pulse just be quiet and listen and look at a watch/clock.  That was pre-pacemaker normal.

Post pacemaker normal, that stopped, the ventricals and the atria were not fighting each other the heart was not working as hard.  My resting rate was now like 50 or 60 due to the lower limit instead of the daytime 44 and nighttime rate in the 30s.

I took most of the first year to come to grips with this.   I dont know if the doc planted in this in my head, he at least told me to not cheat when taking my pulse, a full minute.  But I took my pulse (had to hold the wrist or neck now) very often.  its quiet, my heart stopped I need to check.   And you know what.  It was always working just fine.

You WILL get to the point where you literally forget you have the device. This WILL happen.  Like a belly button or middle toe you will deep down know you have it, but you wont think about it any more than you think about your belly button,  even without a shirt in front of the mirror, your eyes will likely graviate to the belly button more than the pacer scar(s).  

Everyone is different some folks it aint no thing some folks have a lot of anxiety.  And everything in between.  Obviously not one solution either, one persons solution for this may be another persons trigger.   Just know this will happen and it is perfectly normal and just take it one day at a time.

Welcome to the club.  Very happy that you are here and very happy that you have a device that makes you normal.

Adjusting

by skigrl3 - 2023-07-01 23:07:04

Hi There.

A pacemaker is certainly an adjustment all around. I hope that your health is better due to your pm  and maybe this will help you adjust mentally, over time. I must admit the only part I have a hard time with is telling people I have one. Kind of embarrassed actually. It's not rational, I know as I feel so much better and its very freeing not having that weak, fainting feeling! Good luck and welcome to the group.