The last post & a familiar chorus

I am two years on dialysis today. I wish it was winter, because it is the kind of anniversary that I would like to cloak in darkness. I would rather not have opened the curtains today.

The most relevant statistics now stand as follows:

There have been 728 nights of dialysis (two nights off, with permission from my consultant).

That amounts to 5,824 hours of being attached by a line that runs from my tummy to my machine.

Or 242 full days.

I have carried 1,092 litres of dialysis fluid around in my tummy throughout the daytime hours, and by night a total of 8,736 litres have flowed in and out of my abdomen.

I have gone through (and duly recycled) roughly 3,504 cardboard boxes.

I have taken about 8,000 tablets and 30 energy injections.

I have disposed of about 200 bags of hazardous medical waste.

I have spent 0 nights in hospital

I have now been on the transplant list for 22 months.

The average wait for a new kidney is now something like four years.

Now for the really bad news (not really, really). I have decided to stop writing this blog. I didn’t envisage two years of this when I started, and now there is the fear that I will start to repeat myself, because when you re-live the same routine day in, day out, you inevitably return to the same gripes. There is nothing worse than a writer who recycles old metaphors.

I realise I may be doing a disservice to the few people who read Limbo on a regular basis, and who have hung on in there, waiting for the glad tidings of a new kidney.

To those followers, I offer my sincere apologies, but I also advise that in a few months’ time, if I ever cross your mind, that you imagine me, post-transplant, on a beach somewhere - albeit covered from head to toe in Factor 50 - but sipping some exotic cocktail, and enjoying my freedom, released from the infernal groundhog day that is peritoneal dialysis.

Regina xxoxx

Must remember to keep waiting

In this ordered society, you have areas for waiting. You have receptions with pleasant faces and practised phone voices; lobbies with comfortable chairs and air conditioning; a seat or a bench outside the headmaster’s office; actual waiting rooms where you flick through outdated magazines before seeing the doctor or dentist.

I like this form of waiting. The setting of a holding area, and then the crossing of a threshold, and the meeting or appointment plays out.

But what if you are all the time waiting? While you’re eating, while you’re shopping, while you’re sleeping, while you’re carefully painting your toenails. Is that waiting at all? There is no specific activity to it, no area in which it is confined or where it happens. In such circumstances, it’s easy to forget.

I compare it to being stood at a bus stop for a long time; minutes turn to hours and you stop looking up the road, in the direction from which the bus should be coming, and you get distracted. You start looking around, and you get caught up in the life around you.

You are only jolted back to remembering when you try to move too far away from where you are stood, and you realise you are chained to the bus stop, bound to this need to wait.

At night, the fear comes to me. I think about getting the call, and my heart starts pounding. The magnitude of it overwhelms me. Some night, I will have to get up and organise my thoughts and carry myself to the hospital, and phone my mother in short, ill-controlled breaths to tell her it’s happening, and then sign my life into the hands of a surgeon and undergo a major surgery. Just like that.

I’m sure I have written before about the devil I know in the form of dialysis often seeming to me like a sanctuary. I know the deal here. It’s not a great scene, but I’m managing. When they plant a foreign organ in me, there’s no knowing how my body will react.

It’ll be a matter of luck, whether my immune system will treat my new kidney as a burglar in the dark, or whether it will regard it as I regard another girl on the other side of the street if I’m walking home at night – a stranger, but a welcome, comforting presence, a support if anything were to happen.

After nearly two years of waiting, I feel totally unprepared. I wonder if I should put some elbow grease to this now, if I should start setting aside some period of each day…for a mood of expectation. To translate waiting into action, maybe you wish or hope or conjure images.

Perhaps if I put an uncomfortable chair in my hallway – that might be the place for it.