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.


Help, I’m Falling Apart

…the glue that holds our parts together, isn’t holding me!

One of the all time favourite picture books in our house is Tedd Arnold’s “Help I’m Falling Apart”.   It’s a funny little story about a boy who notices strange things happening to his body.  He is horrified! When his parents finally cotton on to what is causing all the distress, they sit him down and explain what bodies do.  His dismay turns into relief.  He is normal.


Tedd Arnold Penguin Books 2000
Tedd Arnold
Penguin Books

I so wish the shenanigans my body has been up to were normal. I’ve been trying for a long time to have someone help me identify the cause of my Dysautonomia so I can treat it, and if we don’t find one, accept it.  I feel like we are closer to an answer than we have ever been. As you know, I can’t rest while there are still possibilities that might explain and inform. Something that might improve our lives!  I say ‘our’ because when I am well, my whole family will have a better life. Whatever works for me works for the good of all of us. I want to be ‘normal’ again, that’s all.  I’ve been looking for someone who can explain why my body does all these abnormal things.

You might remember that earlier this year I convinced my General Physician to refer me to an immunologist.  I really wanted to have a conversation with someone who had a passionate interest in auto-immunity.  I have always wanted to believe my problems are autoimmune in nature because then there is a treatment pathway.  I guess it is only natural that I want something that can be treated.  That’s human, right?  If I don’t have an auto-immune aetiology and that has been proven, then I can accept that and carry on with other investigations.  If all of them prove fruitless at least I will know that I didn’t leave a single stone unturned.

Today was the day of that appointment.  The immunologist, Dr Ameratunga was outstanding.  He got stuck straight into my medical history, listened carefully to my answers, took my assorted bits of paper with a promise to do more research.  And then he asked me if i would mind seeing another immunologist tomorrow who works out of his private practice.  The guy he wants me to see is a neuro-immunologist.  And just like that I am booked in to see him.  The neuro-immunologist has already seen my case and consulted on it from Wellington.  He works in Auckland one day a week. I am looking forward to meeting him in person so I can discover if there is anything further he can add.

And, I still have my little seedling of channelopathy hope perched on the windowsill of my mind.   How strange that after two years of languishing with no proactive assistance on all the other fronts, it looks like I am getting help with the other avenues of possibility too.  Lots of positive movement going on right now.  My head is hopeful. I wish it could translate some happy juju to my body.  Sometimes, even one appointment away from home can be too much for me.  Today, I can barely swallow my mouth is so dry.  I am typing with my eyes shut because my pupils are doing weird things. It is disturbing having my eyes open. Once, during a childhood argument my brother called me “A POO WITH EYES IN IT” (best insult ever).  And that is exactly how I feel.  Like a large lump of amorphous refuse. Blinking at the assault of light on my eyes, horrified by the discovery that I am in fact, a poo.

Before I left his consulting room, Dr Ameratunga said “we need to solve this”.  And I cried.  No tears though, they don’t seem to be working today.  Just that chin tremor moment.  I hope he didn’t see. It’s a big rollercoaster ride and finding caring doctors is pleasantly overwhelming. By the time the hubster and I were back in the parking lot, I wasn’t the only one with a tremoring chin.  “What a good morning!” he said, incredulous.  I smiled through my fog. I so sometimes wish I could choose when to have energy and vitality and enthusiasm.  If I could, I would have chosen that moment.  Because that’s all good stuff, right?  I’m making progress on a few fronts.

I just feel too exhausted to celebrate.