Waiting for a kidney transplant

IN THE two years since I was diagnosed with chronic kidney disease (CKD), I have come to despise a number of things – one of which is my own body. The other is people telling me it could be worse.

It is an empty phrase that does little to comfort and serves only to increase my levels of agitation with each passing fit and healthy person who delivers the line as if they were pointing out some silver lining that I have stubbornly ignored all this time. They should try being kept alive by a machine sometime and see how that reality bites.

The truth is that CKD is one of those joker diseases. It destroys vital organs on the inside, but leaves you looking exactly the same and possibly even better on the surface. It quietly enters your life with no great drama or pangs of discomfort or pain, but it gradually seeps into every ordinary moment until, over the course of weeks, months and years, it grinds you down.

I was diagnosed by accident at the age of 26 and for this alone, I will accept that I was fortunate. My blood pressure was checked on a routine visit to the doctor, it was high and the tests that followed showed my kidney function was severely impaired due to a condition called IgA nephropathy. At the point of diagnosis I had 35 per cent function, granting me one whole year to prepare myself for the inevitability of dialysis.

In those 12 months, the upheaval in my life was minimal. A few tablets in the morning and a few more at night were the only change that had to be imminently made to my daily routine. There was a list of foods to avoid. I was unimpressed that chocolate was one of them, but that meant a slimmed-down figure, and like any female product of such an image-obsessed age, that almost made up for it all. Almost.

It did not make up for the new version of normality I was forced to adopt last summer. Dialysis. I put it off for as long as I could, plucking out random excuses for my consultant as to why I couldn’t possibly go into hospital for the required procedure this week or next week. But my function had dipped below 10 per cent and with that decreased capability came nausea and swelling in my hands and feet and around my eyes.

The day I finally entered Merlin Park Hospital would turn out to be the last time I recognised my body as my own – a few days later, it had been mutilated. A catheter was implanted in my stomach which extended out from a wound just left of my belly button, ending in a connection device which is now my lifeline. Literally.

I am on peritoneal dialysis, a DIY-version of the treatment which differs from haemo-dialysis, the kind that requires patients to travel in and out of hospital three or four times a week. The equipment is fairly simple. I have a machine which I set up every night, boxes of five-litre bags of dialysis fluid and that tube in my tummy. For eight hours while I (try to) sleep, fluids travel in and out of a cavity in my abdomen, clearing my blood of toxins. In the mornings, I disconnect from the machine, weigh myself, check my blood pressure, change the dressings on my tummy, and record readings from the machine for my consultant.

The worst part is that tube. I am now 28 years old. No more than the woman on chemotherapy who finds it most difficult to deal with her hair falling out, having that plastic tube put into my stomach was the single most upsetting part of this experience. It is hideous and I hate looking at it. Second to that is the one and a half litres of dialysis fluid which I carry in my tummy all the time. This swells to about two litres with the accumulation of other fluids during the day, leaving me looking pregnant by midnight, every night.

It has changed everything and it has changed nothing. Being sick has made me feel 100 years old, but it has probably made me more bitter than wise. It has made me reckless in certain matters, because with diagnosis came a devil-may-care attitude to what were otherwise major preoccupations. It has taken away any sense of direction I had and left me feeling lost.

The most damning casualty, however, has been the feeling of invincibility, because that is what youth is – feeling you are going to live forever and that you are untouchable. That is what allows you to go out and take on the world without thinking twice or considering there will ever be a tomorrow that will be anything less than flawless. Facing your mortality at an early age changes that and I fear it is irreversible.

Like the hundreds of people currently hoping for a transplant, I play the torturous waiting game. I know that many of those others are waiting for hearts, lungs and livers and they do not have a treatment like dialysis to keep them going. This is where we kidney patients are “lucky”, but the good fortune is muted because dialysis is a paradox. While with one hand it grants you the physical ability to stay alive, with the other, it strips away the life you once knew, leaving it a shade duller and tainted with enough malaise to make you feel nothing other than weary.

I started out as a crusading warrior who was going to take on this treatment and ensure it didn’t affect my day-to-day running of the mill. I was almost upbeat about the whole thing, but that positivity has gradually faded. It’s the fact that the treatment is constant – every single night with no idea of when you will be released from it. It’s in every room of the house, it’s in my tummy all the time, it’s waiting for me at the end of every day, it accompanies me on every overnight journey.

As I say, it is the ordinary moments that are affected. As singular inconveniences, they would be insignificant. Not being able to stay out too late, requiring a nap most days, having to give up work, saying no to certain foods or even one glass of wine in case your blood pressure or potassium levels go up, going into a dressing room or a communal changing room and leaving again out of embarrassment for what people would think if they saw your tummy, not being able to go abroad (this would mean suspending myself from the transplant list while on holiday – a chance I’m not willing to take in case I miss a matching kidney).

These are all minor annoyances, but taken together and with no end in sight, they chip away at your existence.

It’s probably worse because I’m young. Being sick in your 20s is an isolating experience. Few of your friends or peers have the words to converse easily about tests or treatments. There is an awkwardness about this that I hate and it has led me to constantly minimise my condition, waving off concern and trying to convince well-wishers and sympathisers that not only will I outlive them, I will probably outlive their children also.

The most demanding situation in this regard still most regularly comes about when I’m socialising with friends of friends. I know they know but they’re usually afraid to mention it. I therefore feel required to break this particular stretch of ice – not gently with a little tap, but clumsily with a conversational sledge hammer. In the middle of small talk, I will throw in a comment like, “No, I haven’t any holidays planned for this year because I’m dying.” Or asked to do something simple like pass the salt, I might say: “Well I would, only for this pesky chronic illness.”

If there is a silver lining, it is that my doctors are confident I will get a transplant eventually. I could be two years waiting, they say. But then there is always the faint hope every time the phone rings that it might be the call. That is a blessing and it is what keeps me sane for every moment of this experience. Just don’t tell me it could be worse.

If you wish to follow Regina’s story as she awaits her kidney transplant, log onto her blog at: this-limbo.blogspot.com