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The nights are closing in

The final step of my home dialysis journey (bleugh, journey...sounds like I'm on The X Factor) begins on the 22nd July when Nurse Carla will arrive with a sleeping bag and, presumably, some strong coffee, and sit on my sofa all night whilst I perform my first nocturnal session. It is the dialysis equivalent of hiring a wet nurse.

During a regular daytime session, nothing should go wrong unless I have lined the machine carelessly with one eye on Only Connect and consequently forgotten to connect/un-clamp/tighten something pivotal. Dermot should behave, stay quiet and not do any of his ghastly alarm-yelping. At night, however, the chances of rolling over onto the tubes and occluding the blood flow, or the needles falling out and slowly bleeding to death, are much higher, what with all the concurrent sleeping I'll be doing; when this happens Dermot senses DANGER and screams at me. Undoubtedly, my first session with Carla will be seamless; I know from experience that it is only when the nurses depart that the problems start. Not only will I probably not know how to fix them, I shall be trying to find solutions, half-asleep, at 3 am.

So my feelings about starting nights are all jumbly: on one hand, I shall have whole days at my disposal during which I can frolick and be gay, or go to the cinema or whatever, but on the other hand, I'm shitting myself (see: "bleeding to death"). It occurred to me this week how much better I sleep since I started home dialysis - no more waking up to perform yoga stretches in the wee hours because of inexplicable muscle aches for me. I wonder how well I'll sleep when I'm too terrified to move.

There's also the issue of how night time dialysis might cramp my more...recreational bedtime activities (we'll save that dissection for another post) and in addition I shall be starting nights 2 weeks after the start of (drum roll please...) a 3 month internship at a adolescent cancer charity called Trekstock. I am supremely excited, but the first fortnight will see me cramming in dialysis whenever I can (namely, really late at night) and I don't want the latter two and a half months to be tainted by a bumpy initiation into the Night Users Training Scheme (NUTS*).

Check it out:
I'm just bitching - it will all be ok, it usually is - it's just always a bit crap at the beginning. I don't know how it's going to work right now, but that doesn't mean it isn't going to. Perhaps, in amongst all the worry evoked when I ponder the logistics, is the realisation that once I start nights....that's it. Nothing else to work towards. No more pronouncements about how life will be perfect, "once I get going with...". No more justification as to why I can't get a proper job, or have a proper drink, or be a fully-fledged, proper member of society. There is no transplant on the horizon, this is it: nocturnal haemodialysis is my life now.

And my feelings about that are very jumbly indeed.

*Just in case you thought NUTS is real, it isn't, I made it up so that the acronym spelled a funny word. It should be real, though.


  1. Loving this! I'm training for home dialysis. Thanks for the positivity! Ur comments are bang on!


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