Thursday, August 21, 2014

haiku #2 - my life as a cyborg

Pacemaker? Really?

I'm not sure a haiku should be this repetitive or have such short sentences, but I'm allowing it since this is an almost exact transcript of what an insensitive security person with a dreaded metal-detecting wand recently said to me IN A VERY LOUD VOICE when I asked her not to scan me.  To be honest, I was pretty upset at the time, not least because she had caught me at a very inopportune moment when I'd only just managed to stop crying about my heart situation en route to the venue, but even if I'd met her while in fine fettle, this would have been more than a little insensitive, no?

Anyway, now I've written my "haiku", I'm over it and I thought it might be a good time to revisit the topic of my heart device since it's been a good long while since I had it fitted, almost 18 months, I think, and I realised this morning that I feel very differently about it these days and I've not mentioned it here for ages.  Hopefully some other young pup (I can still call myself a young pup in the scheme of things, can't I?) awaiting a similar procedure will stumble across this and feel soothed in some way.  I know I would have loved to find a youngish person's positive perspective on this when my own procedure was looming over me.

The device I have is called a CRT-D.  It's not the type of pacemaker that your average elderly type might get.  Unlike a bog-standard pacemaker, its main function is to resynchronise the two sides of my heart (which beat out of synch because one side is stretched and bigger than it should be) so that it can pump blood more effectively.  It also does more traditional pacemaking and has an internal defibrillator built in so that my heart can be shocked back into a normal rhythm if it starts behaving in a way that might cause sudden death, something that people with hearts like mine are a bit more susceptible to.  Dulcie can explain it quite well.  She calls it my magic machine and says that my heart used to go wobble-wobble but the magic machine makes it go boom-boom instead.

So, here's how I feel about my "magic machine" now the dust has settled.  First and foremost, I really believe the device has improved my health.  There's no definitive way to prove this, but certain symptoms changed quite noticeably as soon as it was fitted - I stopped getting pins and needles so badly in the middle of the night and I no longer felt like I was about to drop down dead while out and about.  This might just be because the pacemaking element of my device helps my body to cope with the low blood pressure caused by my medication, but I now wonder if I should have been more worried about those near-death feelings while I was having them...  Anyway! 

Six months after getting my CRT-D fitted, I had some tests done and was advised to go on the heart transplant list because things were so bad.  (I realise I never blogged about this - it was ridiculously traumatic and I am only just beginning to come to terms with it really.)  That very same day, coincidentally, my pacemaker was fine tuned while my heart was scanned to make sure it was operating at optimum capacity.  For weeks after that I had all sorts of weird twinges, like my heart muscle was actually tired, in a way that reminded me of having braces tightened on my teeth as a teenager.  Anyway, four months later, my tests were repeated and I was told that things had improved enough that I wouldn't even be allowed on the transplant list now and that my heart had got a bit smaller too.  This could have been caused by one of many factors, but I do hold my pacemaker partly responsible and I LOVE IT for that reason.

(I'll add, for total transparency and since I don't want this just to be some weirdo pacemaker propaganda post, that this hasn't been a miracle cure, far from it.  Things are still very bad with my heart, but I did not want to have to face a heart transplant and, for now, I don't have to.  This is so good.  Go, pacemaker!)

When I was waiting for my pacemaker to be fitted, I wanted to know what it would look like and every picture I found on the internet made me think it would look VERY BAD INDEED, but I have no visible lump/bump from the device at all.  I don't know if that's to do with my "pouting bubbies" (I'm reading some historical fiction at the moment, sorry!) but in most positions that your man on the street might see me in, the actual box can't be seen AT ALL.  It can be felt, but, given its pouting-bubbie location, nobody who didn't already know about it is likely to be touching me there!  

Sometimes it's not that comfortable.  For a while (and I mean quite recently rather than when I was healing) it itched like mad, but that seems to have calmed down.  It used to make my diaphragm twitch, a bit like deep-set hiccups, but that has also stopped happening.  It took a lo-o-o-o-ong time (I mean over a year) before I could comfortably lie on my left-hand side.  Sometimes, if I've been walking around a lot, I'm aware of its weight and it feels kind of bruisy.  It's pretty uncomfortable if anything touches the lumpy bit (battery pack?) at the top of it, agony if Dulcie accidentally grinds her entire body weight into it.  All that said, 90% of the time, I'm not even aware it's there.  It's definitely settling in!

18 months on from having it fitted, my scar is still decidedly visible, although slightly smaller than it used to be.  Its position makes it harder to hide than I'd imagined, but it really doesn't bother me these days and I don't usually care if people can see it so it doesn't stop me wearing whatever I fancy.  Sometimes I catch a glimpse of it in the mirror and think it actually looks pretty cool.  Who'd have thunk it?!

I guess the only other thing to mention is my feelings about my defibrillator.  This was possibly the scariest aspect when I had the thing fitted at first (remember how I used to go to the cinema on my own so I could get over the fear of being zapped while out alone?) but now it is nothing to me.  In fact, not nothing, but a GOOD something.  Thus far it hasn't shocked me and I think I've done pretty much every activity that I would have worried might set it off.  It took a while to get my head round it, but now I really do feel it's a little safeguard, something that probably won't be needed, but will be there (thank goodness) if it ever is.  I'm glad to have it.
Phew!  I think that just about covers it.  If you're still reading and considering joining the pacemaker/defibrillator club (or even if you're just nosey) please feel free to fire any questions you have my way, either in the comments or by email.  I'm happy to answer whatever you might care to ask.  Here's how my pacemaker consultant answered one of Graham's questions, just for starters - "I don't know what it is you're planning to do, but you'd have to be pretty damn impressive to cause the defibrillator to go off."  Har! :)

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