Intro - scared

I have a congenital heart defect and I knew a long time ago that it would probably lead to needing a pacemaker at some point.  I have always had this insane irrational fear and I don't even know what it is I am so afraid of. Well I am going to have to figure it out and how to cope with it soon so I was looking at information online and found this forum.  I probably will just read mostly. were you scared?  what were you scared of?  what was the surgery like - i heard you are just sedated ??? no way i will totally freak out I cant do that.  Anything you want to tell me will help.  


17 Comments

Scared

by novak263 - 2020-04-05 13:54:03

Its normal to be scared. After all a machine is going to be put in your body and hooked to your heart!! That's enough to make anybody scared!! I tried everything I could to not get one. And when I inevitably did know I needed it done, I was petrified. But the good news is after it was done I felt better. The anticipation is worse than the actual procedure by far!! It was weird for awhile and the not lifting your arm thing was a pain in the butt, but then it was fine. I know its there and I'm grateful its doing its job. Its something I'm aware of but not something I think about much. Most people that have one will tell you the same thing. The longer its in, the less foreign it feels. Its almost like another organ to me now. Its just there. You will be freaked out for awhile, but it will pass and you'll settle into your new normal. Breathe, jump in, and do it. Take care and good luck.

Almost a piece of cake !!

by MartyP - 2020-04-05 15:38:00

While I get scared of even thinking about surgery. This was a no brainer and no fear.

I was in the hospital after fainting and they woke me up at 6:30 AM and said my heart stopped for 32 seconds.  I said to the nurse "so what do we do?" She said you are getting a pacemaker!  I said great, put it in (otherwise one other night I might have died).

At 11:00 that morning they wheeled me to the OR, they said good night, next I remeber I woke up and I had Sparky!!

So the actual operation assuming no complications, at least for me, and I was out like a light, I didn't want to know or hear anything, was "A piece of cake".

The physical recovery is pretty simple, just don't raise your arm over your head for two weeks or what the doc tells you.

The mental recovery, depending on your psyche, and for me, I was a little rough. But "we" can talk about that later if you're struggling with that.

But "just do it" it's really a no brainer and after a while, you won't even think about your "Sparky" watching over you and heart.

Marty (Sparky on May 2017) I'm 75 al is well except for this Covid-19 - I DON"T HAVE IT AND DON'T WANT IT !!

  

For me

Pacemaker

by doublehorn48 - 2020-04-05 16:31:05

Implanting a pacemaker is a simple procedure.  I've had several and at least half the time, I went to sleep, and woke up in recovery.  I'm sure you can sleep through it.  You live in Houston.  That's good.  There are a lot of great Doctors and Hospitals in Houston.  If you ever need cancer treatment I can personally recommend MD Anderson.  

There's nothing to fear but fear itself as the saying goes.  Coronavirus concerns  me a lot more than having a pacemaker.  And within a short time you will forget you even have one.  Of cousre, that might be because I have a very simple mind.

Good luck and stay inside,

m. scott

 

It's not so bad.

by Graham M - 2020-04-05 16:40:34

I can understand your concern about having a pacemaker, but believe me, it is not as bad as you think.

I didn't have any time to worry about having my PM - I had a syncope and was taken to ER them  transferred to CCU where I was told I neede a PM.  It was implanted the same day under local anaesthetic without any sedation, and it wasn't painful at all.  All I could feel was a bit of pressure on my shoulder when the PM was being inserted.  I didn't feel the electrodes being attached to my heart.

The first couple of weeks were a bit painful, and I had to sleep sitting up, but a couple of paracetamol tablets were all it took to releive the pain.  I was a bit depressed for about 4 weeks post implant, but it gradually improved and now, eight months down the line, I feel so much better that the trauma of having the PM fitted was well worth going through.  Compared to many people with other heart conditions, needing a pacemeaker is very easy.

As I was leaving the hospital, the nurse said that I would now have a new lease of life, and she was absolutely correct.

Life is good and I'm sure you'll feel this way once you have gone through the first few days or weeks.

Best wishes,

Graham.

You've got this

by Gotrhythm - 2020-04-05 17:42:44

I think anybody with good sense would have a degree of apprehension. And sometimes you're not afraid of anything. You're just afraid. 

Certainly, yours is not the first post from someone saying they are getting a pacemaker and they're scared. Read through the archives. You'll see you're not alone. 

As for anesthesia--that will be something for you to discusss with the anesthesiologist. In most hospitals they sit down with you and discuss your history and also your feelings. If you don't want to be unconscious, you probably don't have to be.

Some people just have a local and they are awake the whole time.

Some people, like me, prefer so-called "conscicous"sedation. That means you are awake enough to answer questions and to follow directions, but you really, really don't care what's happening. There is no fear. You might or might not remember the procedure afterwards.

The thing is it's your choice. So talk to your doctor about how you feel and what your anesthesia choices are.

When you look back, you'll be amazed. I found the whole thing to be easier and less traumatic than the drilling and all that goes into getting a tooth crowned.

y

by Bearkat419 - 2020-04-05 18:29:51

I have always been kinda scared of being put under for stuff because.  heart patient.  what if i dont wake uo, that kinda tends to happen to us more frequently.  but oh no for this they better put me in dream land and beyond i dont think there is any way in heck I could stay calm.  anyway thank you for taking the time to answer me in such detail, it does really help a lot to not just read the same impersonal text "about" it over and over.   hey is there a good youtube video of the actual surgery?  i dont want to see a bunch of clips from it but maybe seeing the whole thing would help.  

No NO NOOOOO Don't do it before

by MartyP - 2020-04-05 20:25:45

There are plenty of videos out there, but my strong suggestion is don't do it before the operation - look at it after.  WHY ??

For me, my knees were getting bad and I wanted to have knee replacement surgery.  So like you I wanted to see what it was like.  GIGANTIC mistake - it scared the crap out of me to the point that I called off the surgery 3 weeks before it was to occur.

There is a phobia called Tomophobia.  Tomophobia is the phobic fear caused by an invasive medical procedure.  It is an emerging anxiety disorder.  You can Google it.

Again, the surgery is quite simple, but wait until after it's done to look at the procedure.

At least that's my suggestion.

If you want to talk real-time, send me a message.

BTW when is the surgery?

  

Piece of cake

by AgentX86 - 2020-04-05 22:00:07

I wasn't aprehensive at all.  The alternative didn't seem to be a good one and there was promise of better things to come.  Honestly, my EP had been discussing a PM to either allow more/different drugs for Aflutter or an AV ablation for six months or more.  After the third ablation failed I knew  a PM wasn't far away.  Within a month I was having asystoles and the PM became real, and real quick.  Note that I'd already had six months to wrap my head around the concept so it wasn't like a cold shower.  I was prepared for it and, more importantly, was prepared (to do just about anything) to feel better.  I was just short of having to quit my job because I couldn't sleep.

Surgery was a piece of cake.  I had only local anesthetic in my groin (for the AV ablation) and shoulder.  I'd had several ablations, carotid caths, and heart caths, most without anything other than a local.  It freaked me out at first, until I figured out what a nothing it really was.  I'd rather have another ablation than go to the dentist.  ;-)

Don't expect to be like me though.  Remember, I've had a lot of experience with these things and I had at least six months to prepare myself for a pacemaker.  Sick, perhaps, but I was getting to like the idea.  If it was going to fix me, lets go!

Surgery was the easiest

by Pacedmyruns - 2020-04-06 00:13:00

For me, the surgery was easy. I was super scared and anxious but it all worked out fine.  They will take good care of you. 

 

 

Surgery is not bad

by RickP - 2020-04-06 00:59:43

I've had my ICD for four weeks.  I had the surgery twice as one of the leads came undone the night after the first surgery. I was awake (sort of) during the procedures and, while uncomfortable, it wasn't painful.  The following afternoon I was home and trying to remember to not lift my arm.

The psycological aspects to all of this were interesting. Having a hunk of technology in my chest hooked up to my heart freaked me out for a few days.  I remember taking my pulse and blood pressure every couple of hours and was hyperaware of how I was feeling. After a few days I was able to relax more and my follow-up visit with the cardiologist really helped me understand that I am OK and that I can return to the things I enjoy. Over time I've relaxed and less hyperaware of my body. 

One of the things that helped me is to post a few questions on this forum.  There are some sharp people on the forums and they provide intelligent and empathetic answers. 

Best of luck and stay safe.....

Surgery is pretty quick

by JaeJae - 2020-04-06 07:13:41

For me I oddly had no fears leading up to the surgery even though I knew for months that I was getting one. 

I did find about half way through my surgery it suddenly dawned on me that it was really happening and that's when I cried my first tears over it (I cant have a usual sedituve due to allergies so I just got local anesthetic and panadol). I think not watching any videos was good and I just reading what I needed to know prior which left me reassured it was all going to be ok. I also asked them to show me the device once it was open in surgery to be put in which was cool cause it kept me in the loop of the timeline and how far into the surgery I was. 

Mines been in 3 weeks and I was not a happy camper for the first two as it felt odd under my skin but now it just doesnt really phase me. I stopped needing panadol about day 5 so as far as pain post surgery goes I'd say it's mostly just very annoying and feels a bit like burning but it goes away. The surgery took about an hour for me so not too long to lay still.

when you know it's coming for years

by Tracey_E - 2020-04-06 14:04:58

I, too, knew from the time I was a kid that one day I would need paced. Kinda like having an axe hanging over our heads, huh? I was diagnosed at age 5, got my first pacer at 27. That's a lot of years to build things up in our heads and let our imagination run away with us. I was afraid of the anesthesia. I was afraid of the scar. I was afraid of never feeling like myself again. Afraid I would die young.

Reality was the surgery was super easy and after I felt amazing. I procrastinated as long as possible which means I really felt bad those last couple of years. That was before the internet so I didn't have a resource like this site to find others like me. I was petrified when I was admitted, then I met the St Judes rep. He showed me a pacer and let me hold it and see how small it was, he explained the surgery, he told me about other patients he'd seen who led full, active lives paced. So, I went into the surgery cautiously optimistic. (btw, he is still my rep, 26 years and 5 devices later! I've been through 3 cardiologists  and he's had other reps work with him over the years, but he's still taking care of my checks) After, my only regret was not doing it sooner. I could have been feeling good all those years I was exhausted, dizzy, and afraid. 

Hang in there! I would not suggest watching the youtube videos, or really even reading too much here. People tend to come here because they are new like you, or have some rare complication looking for answers. It tends to make it appear the number of complications is significantly higher than it is. If you have questions about the surgery or recovery, living with congenital heart disease, or just plain want to chat with someone who's been in your shoes, please don't hesitate to message me. 

several years

by dwelch - 2020-04-08 01:39:06

My congenital issue was found in the pre-teens then first pacer at 19.  I blew off the doctors warnings for the most part in hindsight was very stupid.  I wasnt scared of the procedure or anything and it was fine. 

The recovery takes weeks and all that, this was long before the public internet and sites like this.  So didnt really know what to expect there, but these days too much information to read on the topic at this site alone, much less whatever else is out there.

But that maybe the difference/problem there is too much info out there vs going in blind.  Like most things you dont hear the good news, most of the complaining out there is negative.  LIke when buying something lots of bad reviews, not so much good reviews even though the reality is a zillion people bought it and a tiny percentage of those are complaining.  Even at this site, there is a lot of "is this normal", "has anyone else had this problem", etc.  relative to the "aint no thing", "nothing bad happened", "perfectly normal" posts.

I would listen to Tracey_E, take her up on her offer.  

Talk to your doc, both about the procedure, how soon can/should I get it, etc.  I was awake for my first two pacemakers (on number five) thats how that doc did it at the time.  I wouldnt read too much stuff here or elsewhere as Tracey mentioned.  But I think some places/docs still do it that way, even when they give you something to "calm you down" you drift off and then come out of it later with a stiff painful shoulder and that is what you get to focus on for the day.  Even when awake I had something to calm me down, first time I could see the doc, second time they had a tent over my head and a nurse would look in from the top and ask how I was doing from time to time.

Find a doc you trust, trust the doc you find.  When it is time it is time, go with what the doc says.  The doc picks the device/brand.  The brands are all fine.  My first doc did everything the tests, the surgery, etc.  Current office there is a nurse, a tech, the EP which I talk to most of the time then a surgeon or two/few that does the procedure.  The EP is my primary pacer doc, trust her so trust the others.  Have had to "fire" a couple of docs, but generally have had good luck (moved around, etc, so had to switch from time to time)(wasnt with those docs for more than a couple/few checkups).

Curiously, it's easier than you think...

by csuerun - 2020-04-08 18:37:11

Dear BEARKAT419,

Welcome aboard!  We're glad to have you with us!

I just want to lend my voice to those who are reassuring you that it'll all be fine...that's the only assurance I had going in; I was too uninformed to be scared and that worked out just fine!  Mine was an emergency--no warning, just woke up with total heart block one day--and I think I got lucky with that.  Like my mother always says, "Aren't you glad you don't have a crystal ball?"  For those who were born with a crystal ball, I guess you could say, "Aren't you glad you weren't blindsided by this trauma?"  We play the hand we are dealt; we have no other choice.

As for anesthesia, I cannot take any kind of opiod by mouth, no morphine, no nothing--have had two surgeries with no pain management afterwards and one was a very major surgery (which is where they found the morphine intolerance)--so this whole heart surgery thing made me nervous when they first told me about it in the ER.  Regardless of my protests, they informed me they'd be using fentanyl, an opiod.  I worried about that because my mother had a terrible reaction to it after her last surgery but my doctor was unmoved.  I'm pleased to say I never felt it and certainly didn't have any ill effects afterwards.  

As for sedation, I spent three hours in pre-op watching "Murder She Wrote" and twiddling my thumbs waiting for my spot in line, perfectly at ease and totally calm, so nothing shocked me more than my physical reaction to being wheeled into the operating room while in full control of my senses.  I'd never suspected I would panic, I've never panicked about anything before in my life.  It was an autonomic reaction; I didn't have time to think of being scared, I went from 0 to 60 in half a second.  If they hadn't put a blindfold over my eyes while rhetorically saying, "I hope you're not claustrophobic," I would have crawled out of there on my hands and knees.  Not being able to see anything was my saving grace. 

So, since you have time on your side, I would recommend sitting down with your EP and finding out what the exact process of sedation is.  Sedating me on the table was too little too late.

At my three week follow-up with my EP, I told him about my unexpected reaction and he assured me that he would put in my file that I need some sort of happy pill before they roll me into OR for my battery replacement.  I'm fine with not knowing exactly everything they're doing, I REALLY don't want to see the stark reality of it all while I'm fully conscious.  Not everyone feels that way so do what you think is best.  Fair warning, though, even if you think you know your psyche, sometimes it surprises you.  Mine did.  Err on the side of caution if you're this worried before even going in.

On that note, I would advise against watching any kind of video beforehand; what difference does it make, this procedure is not voluntary.  You have it so you can live to tell the tale, so what they do to you while you're unable to affect any kind of change is superfluous.  Afterwards is plenty soon to see what the miracle of modern medicine did for you.  And by then, it won't be feeding your fears, it will make you stand in awe of the knowledge and skill it takes to be an EP cardiologist.

I received my little lifeguard in January and am due for my three month device check here soon...had to put it off a month because of the plague of the day, but I'm not too worried.  I'm getting along swimingly, no issues.  Not raising my arm was the biggest pain of it all; ice packs will take care of the rest.  I was sore for the first week or so but did not require anything more than Tylenol.  Trying to do my hair was the biggest pain but I even managed to figure that out, and that's saying something considering my skill level.

They still don't know what caused this and are going to look into it further; that's the only thing that worries me, not the device or anything associated with it.  And again, I realize I'm living in paradise right now not knowing the details.  I'll deal with them as they present.  And they may never present.  It may just be one of those things.  So why borrow trouble?  Trying to keep myself off of THAT path is where my focus is today, certainly not the pacemaker.  

The biggest change in my life has been my sleeping habits but a wedge pillow has saved my life!  Sleeping WILL be a challenge so prepare now with a wedge pillow and a soft pillow to put on top of it and be prepared to sleep like a vampire for a few months.  If I'm on the couch, I can finally sleep a bit on my side, but not much.  I'm learning how to sleep on my back and if that's the hardest challenge I have, I'm pretty darn lucky.

Best of luck to you, we are all here pulling for you.  This place saved my sanity that first week I was home.  Sometimes depression has a way of sneaking up on you and finding people to talk to who have felt the same things you feel is very valuable.  We are here for you, so use us.  The therapy goes both ways.

:)

CSUERUN

by AgentX86 - 2020-04-08 22:43:21

Nice story.  I was the opposite.  I didn't even freak before my CABG, when I thought I would.  I knew the PM was going to be a piece of cake after that (and that wasn't all that bad).  And it was.

As far as sleeping goes, I found a recliner to be the best solution to sleeping.  I slept in a recliner for five months after my CABG, so had one put in our bedroom.  After my PM implant, I used it for two months, though I could have cut that short a month, easily.  A recliner has several advantages, one is that it makes sleeping on one's back easier (I don't like back sleeping either - frequent leg cramps) and more importantly it keeps one from rolling over on that shoulder.  If the weight of the arm is too much on the shoulder, a sling works.  But do not use a sling during the day.

AgentX86...or is it Maxwell Smart, hmmm?

by csuerun - 2020-04-10 11:52:26

I had to look up CABG and let me tell you, if there's one thing I've learned on this site, it's how easy I've got it.

You are one brave puppy and now my personal hero.

I would completely agree about using a recliner.  If I ever have to do anything remotely connected to this again, I will first purchase a recliner!  But when you're an early bird and your husband is a night owl and you have one living room, one TV, no recliner, it's the wedge pillow that will save the day.  Oh, I almost forgot the most important part, put a pillow beneath your knees if you're going to sleep on your back--some people prefer it under their hips--whatever helps your lower back, you're going to want that support.

As for a sling, I completely agree with Max, I did not wear mine during the day, but I did at night to keep myself from raising my arm in my sleep.  My doctor was adamant about the whole 5 weeks no upward movement thing so, not having the sick leave to tempt fate, I was very diligent about that.

Best of luck, BEARKAT!  Like Gotrhythm said, you got this! 

:)

Over thinking

by DMJ - 2020-04-20 01:25:59

Many of us here got our PM as a result of heart block or serious arrhythmia's or VT etc.  We were not thinking of it for years.  It was more like being told you have this heart issue which can maybe kill you and we can give you a PM and or a ICD and it will help correct the problem from the inside.  I have had 3 implanted and it is not a painful thing.  I was put out the first time and given Versed which was not a good choice for me.  You doctor will discuss all this with you. I prefer being put under, you just drift off and when you wake up you're in recovery.  It is not open heart surgery,  We do what we need to do.

You know you're wired when...

Born to be Wired is your theme song.

Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.