Pacemaker Progress

Yesterday, I had my pacemaker checkup.  Usually, these happen now every six months, but this one was a little shorter in time because they recently interrogated my little device when I had my second Tilt Table Test, right before starting my infusions.

We’ve been looking for some objective data to measure the improvement since the immuno-suppression began in January.  I’ve been feeling so amazing compared to before, and doing more all the time.  There have been crashes when I have pushed too hard, but the trend from my point of view is upwards!  So it was really cool yesterday to find that my heart is needing so much less help from the pacemaker.  In the time since my new treatment, I have only had 62 rate drop episodes, most of them during the night (it’s normal for the heart rate to drop during deep sleep, but my pacemaker still paces me, even then.  These episodes are much more benign than the ones when I am up and about).  62!  Most of which aren’t a worry at all! So happy.  I don’t remember ever having a number across such a long stretch of time that was only two digits.  Real progress!

yep, that's right_

And because ridiculous hopefulness is part of my way of being at present, I enquired whether or not it meant that one day I might be able to have my pacemaker removed. Lisa, the lovely nurse specialist (who was in theatre with me the day it was inserted) said it would be more likely they would just upgrade me when it was time, to the new MRI compatible pacemaker.  She thought having one on board would be sensible, even if my wellness continues because, well, you know, old age.  Maybe she is doubtful this good run will continue. But I am hopeful.

For me, the MRI compatible pacemakers seemed frustratingly pointless, because my understanding was that my leads were not MRI compatible.  When they change out your pacemaker, they don’t swap the leads.  That’s because over the last six years, my leads have been growing into my veins.  Removing them would be too dangerous, there isn’t even a surgeon in NZ who does such a surgery. But Lisa told me yesterday that my leads are MRI friendly!!  So happy about that!  It means that down the track, once this old model is replaced, if I ever need further testing about anything, I’ll be able to have it.

So two pieces of great news!

Did you ever wonder how they interrogate a pacemaker?  The hardest part about it is finding a park and getting to the pacemaker clinic on time. Otherwise, it’s as easy as 1, 2, 3!



And that is it!  Done!
At Auckland City Hospital, there is an awesome barrista on Level 5.  So if there was ever a step four, it might be a quick detour to pick up an excellent coffee!

Do you have a pacemaker, too?  They’re such clever little devices aren’t they?  Are your pacemaker check-ups like this one?  Or maybe you are going to get a pacemaker… got any questions?  Or maybe you are just curious… my pacemaker lump has always invited curiosity and tentative ‘feels’ from people I know.  I’m all about the information, so if you have any questions at all, I’m your girl.


3 thoughts on “Pacemaker Progress”

  1. I’m getting mine checked on Thursday! Such an underwhelming event. I only need the mouse on my chest they don’t bother with the rest. So exciting your leads are MRI compatible. Makes life easier and the MRI really isn’t that much different except they turn you onto a neutral mode and whip you in. When I did my first one last year all the radiologists gathered around for the event as it’s still not common. And there were 2 of us on at the same time as they have to alter the machine to do it. But other than that it was like every other MRI I’ve had.
    Have I told you lately how happy I am for you that you’ve had these improvements? It’s such fantastic news Rach and to have tangible proof is so amazing. Here’s to more improvements and great adventures ahead.

    Much love and hugs Michelle xx

  2. Oh Rachel, how wonderful. It was just as you had anticipated. At least now you are getting some empirical data to verify your improvement. Hopefully this will all go towards a successful long term treatment regime for you once you stop the steroid infusions. I just hope the doctors don’t procrastinate as before, and that they start you on something more permanent a.s.a.p.
    Keep us all posted.
    Love, Carol.

  3. So happy the lil ticker is working a bit better Rach!! Go immune-suppression!! I hope things only keep getting better for you with less down days xoxo

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