New to the club

Nice to meet you, Pacer@37

by Persephone - 2022-06-02 16:13:51

I hope you're feeling well physically with your pacer. The story about your experience with your grandmother is one for the ages and I'm sure you'll be able to share it with many others over time. I would hope that you could convey your concerns about your deep anxiety to your medical team, to get some help. You shouldn't have to bear this alone.

(How is grandmother doing?)

Six years?!!

by AgentX86 - 2022-06-02 18:12:23

Episodes of syncope over six years and finally ending up with a pacemaker is really bad. Unforgiveable.  One syncope event is bad enough and it should have been enough to warrant very agressive action. One event can kill (driving, top of ladder or stairs).

A pause of five seconds isn't all that bad.  That's usually the split between "wait and see" and "lets do something". By itself, it's not a "my tail's on fire" sort of thing yet. I had three secong pauses for years without problems befor things got worse.  My longest detected pause was eight seconds (I know I had longer) and we've had people here  with pauses well over twenty  seconds. That's "hair on fire" time.

Otherwise, you're not describing anything terribly unusual.  Anxiety is the norm for those who have had this surgery out of the blue. It takes time for most to process this.  My EP had been discussing a PM for a year, as a tool to fight my flutter.  I wanted to go through all the alternatives first.  FInally, I needed a PM because of the pauses (caused by one of the drugs I was using, trying to avoid a pacemaker) and there she be. I'd had a year to wrap by head around the possibility before there wasn't a choice. It wasn't a big deal then.  My physical recovery couldn't have gone smoother either. I was very fortunate but I can certainly understand where you're coming from.  The vast majority are on your side of the fence.

If you need help, cognative therapy seems to be the answer, perhaps with some drugs for a short time.

Your pacemaker should be 5cm, or so, right of the shoulder and maybe 4-5cm below the collar bone. We've had many here who have said theirs is more on the side or even arm pit. I wouldn't like that but what is, is. Do not play with it.  There is a thing called "twiddler's syndrome".  You don't want to go there.  In the meantime, keep moving that arm.  You won't tear the leads out.  It's almost impossible if the leads were anchored properly and if they aren't, they'll probably pull out on their own. The limits on motion are more to assure proper healing than anything else (but pulling leads out is much scarier). If the wound is ripped open and an infection starts, it's serious.  Deadly serious. Limiting the motion on the shoulder keeps this from happening but you have to move it or the joint will freeze.  Physical Therapy isn't fun either (trust me on that one).

Oh, and welcome to the club.  I hope you hang around for a while.  You'll forget the whole thing soon enough but we'd still like you to hang around to help others.

You are Not on Your Own

by SeenBetterDays - 2022-06-03 08:00:06

Hi PACER@37, 

I can completely relate to your anxiety.  I had my pacemaker at 49 so a fair bit older than you but still felt, as I am sure you do, too young for a pacemaker.  Having been on this forum I now know that there are many people who have had to deal with these issues at a much younger age so the reality is we don't get to choose.  The only thing to try and remember is that you are much safer now you have the device even though you might feel a bit resentful and angry at it being there!  I sometimes feel that when you go through something lifechanging, as you have, there isn't always a recognition of the psychological impacts.  The doctors are trained at fixing the physical problems but not always the mental aftermath.  It's really important to talk it through and this is where places like this are a fantastic help.  People may not be in exactly the same position as you but they have experienced something similar and understand what you are going through.  I have found amazing insight and knowledge from members like AgentX86 and just knowing you're not on your own can really help.

I try to get out every day into nature and do some walking and also do a short meditation each morning.  I find that helps me but I know it's very much an individual thing, you will find what works best for you.  For some people, the transition to pacing will be easier than others but I know I am still not at peace with it yet.  It's a process of adaptation and will take time and talking it through is part of the recovery.  Take care and remember if you have questions or need reassurance this is the best place to be.

Sending you best wishes for a speedy recovery.

Rebecca

It will get better

by Lily - 2022-06-03 09:09:56

Hi, I am 36 years old and had my PM implanted in January 2022. I also had emergency surgery after being hospitalised for 2 weeks, as I found out that my heart was pausing for about 4 seconds, especially during night time.

I can totally relate to how you feel and I can share with you some of the things that helped me go on with my life. I was lucky to also talk to a psychologist and discuss my feelings. So I strongly recommend it, if you have the possibility. I named my PM Jimmy and I consider him my best friend that is always there for me. Sounds stupid, but it works to name it and not see it as just a piece of metal in your body. I am trying not to think of it as such a big deal now and to even make jokes about it here and there, like I am such a cool cyborg. I gradually got back to my work and hobbies and now I don't think about it that much. After a few months you will forget you even have it sometimes. Just give yourself time to adjust to it and don't put too much pressure on yourself. Follow the doctor's advice and things will get better slowly.

Sending you good vibes!

Not alone - very similar circumstances

by IrishPacer - 2022-06-05 19:07:10

I can’t tell you how much your post resonates with me - so many similarities. Had been thinking about posting something myself. 

I’m 36, Irish living in Australia and after 7 years of occasional syncopes I had a loop recorder implanted last June. After a couple of minor syncopes in Nov and Jan which didn’t show cardiac abnormality, the cardiologist agreed to remove it 2 weeks ago. The day before the surgery I had a syncope which showed up a 12 second pause followed by a 6 second pause...but this wasn’t alerted until half an hour after I had been discharged following the loop recorder removal! Of course there followed some mad panic, 8 days in hospital, a barrage of tests and a pacemaker. I have a Medtronic azure with double leads. 

I can’t get my head around how quickly this all transpired. I think I’m still in shock. The device is still very uncomfortable and I find it hard to believe I could ever live normally not thinking about it or feeling it’s presence all the time. 

Reading posts on this site has been so valuable as I don’t know anyone with a pacemaker, let alone someone around my own age in similar circumstances.  It does sound like it gets better and so many posters talk about living a completely normal life. Here’s hoping.

You will definitely feel better

by Champak - 2022-06-05 19:55:45

Hi - although am not in your age bracket, I did get a pacemaker 4 1/2 years ago. It was terrifying to say the least but just reading posts on this group has been a lot of support. Now I joke about being bionic.

Speedy recovery!

Champak

Doing well

by pacer@37 - 2022-06-15 18:59:16

Thank you for the comments, I really appreciate that I have found people that can relate to my situation. Obviously my Nan gets it, she is doing very well but, I cannot bombard her with all my anxieties as that would not be helpful to her recovery.  

I completely agree that it is unforgiveable to have waited so long for a pacemaker. I had countless tests over the 6 years and in 2020 had a loop recorder implanted. In the following 18 months I had one syncope episode, last year the professor did tell me she was leaning toward a pacemaker but wanted to see evidence on the loop first, they needed me to have another episode. Well I did and it was the worst of them all, we are so lucky I didnt fall down the stairs, as I went out on the landing to call my partner when I started to feel funny (I did make it back into the bedroom) and I am grateful my kids didnt witness it. We have 3, two teens and a 4 year old and they are all Autistic so it would have been awful for them to see me like that. 

If this experience has taught me anything it is that I needed to slow down and put myself first sometimes. While it has been a shock to have the pacemaker as an emergency measure, deep down I knew it was a possibilty and all of it is partly due to my levels of stress. 

I think naming it is a great idea! For now mine will be known as my little lodger. 

IrishPacer, I completely get every word, since my first post I am actully feeling much less uncomfortable so I hope this becomes the case for you. I didn't feel I had been given near enough information about the device and its placement etc, maybe that's just my hyperfocusing brain, but once I educated myself on the whole thing I felt much better able to manage the thoughts surrounding it. I agree also that reading posts on this site has helped very much.