N00b

A pacemaker is not a problem. A pacemaker is a fix for a problem

by Gotrhythm - 2018-03-22 13:45:07

Welcome. Having a pacemaker was new once upon a time to everyone here, and for a large number of us, it came out of the blue. So you're not alone.

Use a common sense level of care until the surgical wound is healed--because you have a wound, not because you have a pacemaker. After you are healed up, life should proceed pretty much as normal. Really. Whatever you did before, you'll be able to do again. I know what your doctor said was hard to believe, and I understand why--but the fact is, he's right.

No, do not be super-careful. Pacemakers aren't fragile--today's pacemakers are incredibly tough and incredibly dependable. Nothing you do will break your pacemaker or cause it to malfunction. It's safe to use cell phones and any electrical equipment or appliances you are likely to encounter.

What you're up against right now is fear of the unknown. IMHO, the best cure for that fear is knowlege. You probably don't know much about the problem that neccessitated the pacemaker--because you didn't know you had it. So learn about it now, and learn what a pacemaker can do to fix it, or to make it so that the problem doesn't happen anymore. It probably isn't as scary as you think.

You've got this!

by bposter - 2018-03-22 14:57:11

My first pacemaker was last Dec, I had complicatons almost right away, but after they got it sorted out with a new lead I felt that on the 4-week mark I turned a corner. That pacer ended up getting pulled back out, and a new one placed on Feb 6th of this year. At 4 weeks I didnt feel like I had the first time, and had issues again at 5 weeks. Now that I have just crossed the 6-week mark I am feeling a LOT better.
I surmise that the 4-6 weeks marks a change for most folks on here; things get better. I cant say enough about the change I felt almost overnight after 6 weeks this time. My hope for you, and everyone else, is that the changes come sooner rather than later. But if not, dont lose heart. It gets better!

wait...there''s an alarm? lol

by RoseOfOz - 2018-03-22 17:03:15

Hey guys

Like I said, little to no counselling. I didn't even know there was an alarm. I will be having a bit to say to my specialist when I go for my follow up. I know I'm a public patient and all, but 'need the info' lol. 

you're all legends :)

cheers

Rose

The hardest thing

by Theknotguy - 2018-03-23 13:06:48

The hardest thing at first is to filter out all the "bad" information from the "good".  I go back to the pacemaker information sheet they handed out in the hospital after I got my pacemaker.  Ten items of the list.  Four items were completely wrong.  Six items were partially wrong.  In essence the whole list was wrong.  I've pointed it out to the hospital staff several times but, of course, get completely ignored.  Even had one nurse tell me that I only had enough knowledge to be dangerous after I pointed out the fact that I had been living with a pacemaker for four years.  I have the machine inside my body and I've lived with it 24 hours a day and she knows more than I do??? Ah well.  They keep publishing the list because something might happen and, if it isn't on the list, they're afraid they'll be sued.  Or, as we say on the forum, they're using the paper to cover certain parts of their "corporate" body.  

If' you're on the forum for a little bit you'll see comments from TraceyE.  She has one of the most active lifestyles while living with five pacemakers over the years.  A shining example.  We've had people doing all sorts of things while living with the pacemaker.  So, eventually you figure out the pacemaker isn't a hindrance to having a "normal" life.  I tell people I can do everything I did before getting the pacemaker, plus - I can do some things I couldn't because I now have a regular heartbeat.  

This forum  has been most helpful for me because I've been able to separate fiction from facts as well as learning some things my EP didn't have time to tell me.  So it's been a great help. 

And, yes, eventually you do forget (at times) that you have a pacemaker.  For some people it just takes a while.  

 Hopefully everthing will go well for you and you can get quickly back to a "normal" life.  

One more thought

by Gotrhythm - 2018-03-23 13:55:42

You said in your post "I didn't know I was sick."

You really need to talk to your doc and ask about heart disease. It's entirely possible that you weren't "sick" then and you aren't now.

After I got a pacemaker I was given stress EKGs, Echocardiograms, and a heart catherterizaion. All showed my heart not only to be normal, but to be extraordinarily healthy for my age. Needless to say, that didn't compute. If nothing was wrong, why did I need a pacemaker to make my heart beat in a normal rhythm?

But I found out at Pacemaker Club that it's not uncommon for rhythm problems to happen in a heart that has no heart disease at all. Strange but true.

So your pacemaker doesn't need for you to be super careful and neither does your heart. By all means, check with your doctor to see what you should be doing, but be aware that people who have pacemakers live normal lives and have the same life expectancy as people who don't.

Thanks

by RoseOfOz - 2018-03-26 01:55:30

Thanks for all the comments. Feeling more mobile but still get a light lightheaded and short of breath. It's weird to think that this time two weeks ago I was just about to succumb to - what now appears  to be a chronic condition. Spooky. 

BTW I feel very fortunate to have collapsed where I did - I was fortunate to have been taken to one of Sydney's premier hospitals. The nurses were angels. Once diagnosed I only had to wait about 36 hours for the implantation. And I'm a public patient - so I will incur no fees. So aside from the lack of adequate counselling I feel pretty darn lucky. 

Cheers and hugs, all x

give it time

by dwelch - 2018-03-29 02:50:18

I got my first one at 19 in 1986.  No internet no pacemakerclub.  Many many years and a few pacers before I could get info from anyone other than my doctor.  this site is awesome.

I was a bmxer and skateboarder, got right back into those things shortly after the pacer.  my pacer was not a surprise, for many years leading up the doc didnt want me doing such activities, with complete heart block I might fall over and die doing that stuff, but  I did it anyway.  (well I did quit soccer because of docs recommendations and my parents then forcing that, didnt tell the doc about the other activities after that, i was a pre-teen/teen what do you expect).

Other than things that directly touch or impact the pacer (like shooting a rifle from that side) dont see why you couldnt go back and do those things.  Give it some number of weeks to recover, let the pain drive how fast/slow you regain mobility in that shoulder/arm.  

These things are supposed to make us normal, not special.  It may take a few visits to get you dialed in and you will have an upper limit that you didnt have before so that may limit how hard you can push your activity, but overall these things are supposed to make us normal so we can do normal things not special in a way that we cant.

Occasional chest pains

by Queen50 - 2018-03-31 00:17:50

I’m new to this site and am happy to have found it. I’m 4 weeks post op and I’m still getting occasional chest pains. 1-2 times a day. Is this normal?