Normality

Hi everyone,

I am 26 years old and had a duel chamber pacemaker fitted in January for 3rd degree heart block that was causing intense dizzy spells and light headed ness. 
 

I have been struggling emotionally in the run up to the surgery and had a bit of a break down a few days before the surgery. 
 

Since the surgery I have not been having the same lightheadedness and dizziness so I know the pacemaker must be doing it's job but I constantly feel as though it might not be working properly. I am also unable to sleep on my left hand side because I can feel my heart beating against the inside of my ribs. 
 

in addition to this I have also started getting pains in my left arm and arm pit and am convinced they are related to the pacemaker. I have not really moved my arm much since the surgery as I am scared of displacing the leads. My cardiologist has said I should start getting back in the gym but I am scared to do so. 
 

Prior to my surgery I would run 5-10km per day but have done nothing since. Has anyone else been through the same thing? I have spoken to a couple of people but they have been a lot older than I am and have not had to make the same lifestyle changes as I have. 
 

I am seeing a therapist who is helping with the anxiety but I'm hoping others might have been through something similar and can share their techniques for overcoming the lifestyle change. 
 

 


10 Comments

Normalcy

by AgentX86 - 2020-03-16 21:14:56

It's not surprising that you can't sleep on your left side.  You just had it ripped open a feww weeks ago.  All of the pain can be attributed to frozen shoulder.  You really have to use that arm and at this point, use it normally.  Don't hesitate to do what you did before (perhaps not full extension, as in swinging a baseball bat or golf club).  You need to move that shoulder or you're going to be in a real world of hurt.

Move

by BradyJohn - 2020-03-16 23:02:05

I'm 56 but pretty active.  I had a dual lead PM implanted Feb 25.  I never really believed that stuff about 'dislodging the leads'.  So, I went for a good walk the evening after my surgery, then lots of walks in that first week, eventually running again, an 11k this past Saturday.  I agree with Agent86, get that arm and shoulder moving and start to live the life that's waiting for you.

Cheers,

John

It's all part of the healing process

by call_me_gigi - 2020-03-17 02:55:29

Hey, I'm 23 so hopefully you'll be able to relate a little more with this.

I got my PM in december 2018, and I definitely dealt with some anxiety over the movement of my left shoulder and arm. The doctor told me after a few days that I could get back to moving it normally but to avoid raising my arm above my shoulder. I didn't follow his advice cause I was scared and ended up in physiotherapy for frozen shoulder which hurt SO bad. It did get better by just allowing myself to do the exercises little by little and pushing myself a bit more each time.

I have to say I didn't really deal with anxiety before the surgery but around my third night back home when I was off the pain meds and wasn't feeling as tired I'd have to watch friends or any show that was fun and light-hearted until I fell asleep. This went on for months and I wouldn't be able to sleep without this. I told an aunt who's a psychologist and she told me that I was likely dealing with delayed anxiety over the surgery. 

I'd say I was fine for almost a year but for some reason I've gone back to the "why me" mentality and just wanting to feel like a normal 23 year old (I've also dealt with the stress from medschool and life) and I've gone back to needing a tv show to be able to fall asleep at night.

Seeing a therapist will definitely help you out with this, but sadly it's a process and you kinda have to go through all of the stages of grief... at least that's what happened to me. When you're young it feels huge to suddenly need a device to help keep you going, and knowing that it's something that you'll have to deal with for 60+ years is tough. Keep this in mind, you're not just healing physically but mentally as well.

I really hope you feel better soon.

It's normal

by Theknotguy - 2020-03-17 10:01:46

Your feelings are normal.  I think it was about a year out before I finally stopped being concerned about my pacemaker not working.  Logically I knew everything was working OK but emotionally it was really hard to trust this piece of equipment.  Eventually you learn to trust the equipment. 

As far as soreness, just keep moving.  I was nine months out and went  back to working in the wood shop.  I'd be OK while working but the next day it felt like someone had wrapped my pacemaker in sandpaper and scrubbed it around in the pacemaker pocket.  Tylenol, hot and cold packs were my friends.

After six years I still can't sleep on my left side.  Best I can do is to put a pillow between my head and shoulder.  Even then I can only stay in that position for about 15 minutes.  So it may be something you have to live with. 

Seeing a therapist is a great help.  I did the same.  

I feel the thing that helped me the most was  getting out and moving.  Doesn't matter what, just get out of the house and keep moving.  Walk around the block, take the dog for a walk, do something.  If you don't have a dog, take the neighbor's dog for a walk.  

Oh, by the way, those furry four leg partners, otherwise known as a dog or a cat are a great help too.  I would take my son's dogs for a walk and they were  always doing something that would make me laugh.  It's really hard to be depressed when you are laughing.  One dog would always stick her nose under my arm and pester me to be petted.  The other would bring me a ball and pester me until I'd throw it.  Like I said, it's really hard to be depressed when you are laughing.  Not to mention petting dogs is a great help to you emotionally.  Maybe you can find someone who does pet therapy?  

Otherwise, hang in there.  Things do get better.  
 

been there, done that

by Tracey_E - 2020-03-17 11:20:03

I was 27 when I got my first pacer for 3rd degree heart block. That was in 1994 so I've been living with it as long as you've been alive. I'm healthy and active, no one would look at me and see a heart patient. 

Everything you are feeling is NORMAL. I love that your doctor is encouraging you to get back to the gym and that you are feeling better. It can take some time to learn to trust the pacer to do its job, but it's a state of the art computer that is much more dependable than our own screwy electrical system. Dip your toes and start easy. If you aren't ready for the gym, take a walk. Actually, take a walk anyway, we should all be staying isolated right now, everyone regardless of their health. But don't be afraid of the gym. 

For me, the more I did and kept feeling good, when I could be active and not get dizzy, the easier it was to move on and forget about it. That probably sounds crazy to you right now, but most of us truly do forget about it and move on. 

Use the arm normally or you'll end up with a frozen shoulder. Sounds like that might already be starting. If you can't get mobility back on your own, ask about physical therapy. The leads aren't going anywhere at this point. They are not put in tight, the end is anchored and there is plenty of slack so they can move with us. If anything was going to happen to the leads, it would have been in the first few days. People get this mental image of yanking them out but it doesn't work that way.

If you ever want to chat, feel free to message me. 

Recovery post PM

by WazzA - 2020-03-17 16:12:20

I feel for you all being so young it is a hell of a life changer. You have already had some reassuring words from some who have gone through this. Believe them when they say it is all pretty normal for you to find pain in your shoulder from your PM digging in when trying to sleep on your side. It WILL get better over the next few days,weeks & months! Listen to your body & those very helpful tips like putting a pillow between your shoulder to elevate your head! Best wishes on your journey. 

Thanks

by Jlamb25 - 2020-03-17 16:37:56

Thank you everyone for taking the time to reply to me. Some of your comments have really helped me put some things into perspective. 
 

Today I have put my arm above shoulder height and properly stretched for the first time since the surgery - and bloody hell was it painful - my arm and shoulder are very stiff at the moment but after reading some of your comments I am going to try to keep it moving to avoid lock shoulder.

 

I will try the tip about sleeping with a pillow tonight to see if it helps - my issue is a little different to feeling the pace maker dig into my shoulder. The issue is more that I can feel my heart beat on my ribs. The Dr said this is where the ball/base of the heart makes contact with the rib cage / lungs as when I take a deep breath the sensation goes away. 

 

@Tracey_E I will likely message you in the coming days as I think it will really help my recovery talking to someone who has been through the same emotions at the same age as I am now. Weirdly I was born in 1994 when you had your first pace maker fitted :) 

 

thanks again everyone for your kind words. 
 

 

36 had my pacemaker fitted in july 2019

by Philm313 - 2020-03-17 17:14:14

i had my pacemaker fitted in july i was worried about moving my arm for ages also had an infection in the wound site after opp so made me more nervus i find talking about it helps, mine dose move round alot under my skin which is scary at time i had one incedent where it completly twisted on to its side (not to much detail but it was someones knee and they thought i was screaming with plesure )and i had to pop it back was extremaly painfull i went to see my cardioligest he checked everything over and all was fine and he explaind they are very robust machines, i still have some issues with my scar (keloid) but the pacemaker is fine and ive fully returened back to a normal life

Coping with the anxiety

by Yaz - 2020-03-18 16:19:48

Hi there! I had my pm fitted January so just over 9 weeks in! I live, sleep, dream, nightmare pacemaker. Had three setting changes and almost there. I have been extremely anxious about it all and get great comfort from you guys who have come through it. It's so easy for family and friends to tell us to relax and trust the device but easier said than done. We'll get there! Good luck and keep posting!

Soreness

by Debby - 2020-03-21 23:14:51

When I read your question I felt like it was mine rewritten. I have had my PM for about 6 months. I was also afraid to move my arm . My DR said not to raise my arm above my shoulder for a  month. When I went in for my 1 month check up he told me to go back to normal. Just don't go crazy lifting too much. Like I said I am 6 mounth in. I still can't sleep on my left side. No pain just ucomfortable. But in the beginning my left arm & armpit hurt like crazy. But this will ease up & you will feel better. Just use you arm, keep it loose. I am glad you found this page, I was worried until I also recieved advise on this group.  Thanks to all.

 

 

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