Relentless. That’s what I would choose if I had to describe living with kidney failure and on dialysis in one word. Living with kidney failure just never goes away. The constant maintenance and restraint you have to have is exhausting. The time you spend at hospital eats into everything. Nothing about your day is free of the constraints the condition presents. But paradoxically it is these constraints – and your dialysis days – that keeps you alive and as well as possible.
Some say that dialysis is like a roller coaster. Each day with your ‘on’ and ‘off’ days all the good and bad things in your blood go up and down, swinging you back and forth from feeling great to often – depending on what you eat and drink – really very ordinary. After dialysis you feel the best, but unfortunately it’s then all uphill until you walk through the dialysis unit’s doors in two days time. Well, that’s how I feel at least.
The roller coaster you ride is also an emotional one. For weeks you’re stuck in a routine: your dialysis sessions are another thing to fit in your week. You get to hospital without thinking about it. But, then, a switch is flicked. Suddenly simply making it to hospital and the dialysis ward seems too much.
I think of all I could be doing out there, in the world, living my life. I think of my work, my research. What could I be writing? What could I be reading? What non-work fun could I be having? At hospital four days a week there is never enough time. My laptop is full of papers half written. Grant proposals half started. Articles sit half read, stacked in piles based on topic and priority on the floor of my study. I’m not sure when I last saw some of my oldest and closest of friends.
And all of this this is to say nothing of everything else – the physical, psychological and emotional constraints of kidney failure.
The physical constraints alone can sometimes seem impossible. Each dialysis session you sit, tied to a machine, unable to move, for around 5 hours. Rigorous fluid restrictions are in place between each session. The general rule is that a patient is permitted 500ml per day, plus whatever urine output they have. (And when calculating the 500ml this sadly includes all fluid: water, coffee, yoghurt, ice cream, etc. as well as any food that contains liquid, such as pasta or rice.) Then there are the dietary restrictions. Potassium and phosphate need to be kept to a minimum. Phosphate binders must to be taken with all meals and snacks. Fresh fruit and crisp salads and vegetables are pretty much a thing of the past.
The time spent attached to the dialysis machine, together with all of these restrictions, is what keeps dialysis patients well. While my twenty or so hours of dialysis each week is nothing like what a healthy person’s kidneys do 24 hours a day 7 days a week, it’s what keeps me here.
But, still, sometimes all of this – and everything else I don’t even want to think of right now – can just become too much.
Relentless.
dialysis days 