My sister and I have always been poles apart. Sadie was "the brainy one" and I was "the sporty one"; she was "the rebel" and I was "the good girl"; she likes garage and (much to her disgust) I like alt.country; she runs a record label and I work in the media; she goes for "bad boys" and I go for whimsical intellectuals. Her kidneys and pancreas don't work; mine do.
Sadie first became ill in 1981. She was nine years old. She started drinking a lot of water and became extremely skinny. The doctors said it was a virus and that she would be fine but my mum, Pam, wasn't convinced. When Sadie finally collapsed, waif-like and doubled over with cramps, Pam drove like a maniac the 20 miles to our nearest hospital and carried her to the children's ward, where they diagnosed her as being diabetic.
She was hyperglycaemic, which meant she had an abnormally high glucose level in her blood and no insulin to regulate it. This is why she was wasting away - her body couldn't properly process the food she was eating.
Being a smart (sic. stupid) child Sadie soon learned how to manipulate her condition. She never queued for school dinners, claiming she had to eat at exactly the same time every day (which wasn't true), and, at 13, when she was caught shoplifting, she claimed that low blood-sugar levels made her do it. Her white lies became more serious when, as a teenager, she began giving herself too little insulin. This resulted in high blood sugar levels but also meant she could eat what she liked and still stay slim.
Dealing with a warped body image is common among teenage girls but rife among diabetic teenage girls. Sadie's method of control was particularly risky and, when her blood test results arrived in the post, our house became a war-zone of hot-headed women firing recriminations.
Unsurprisingly, perhaps, the early 90s saw Sadie fall for the fleeting highs of the rave scene. The idea that drugs constituted escapism, that she contributed to her physical decline, are too easy. We all went raving in fields as teenagers - there wasn't much else to do in west Wales. Certainly Sadie was a bit reckless but her dysfunctional body was what rendered her behaviour dysfunctional.
Her mid-20s saw a simultaneous shift to a positive mental attitude, stringently healthy lifestyle and gradual physical decline. Kidney problems started as urinary tract infections in 1993. This was not so unusual since 30-40% of diabetics develop kidney problems. Disturbingly, though, symptoms of kidney failure do not usually occur until 70-80% of the function is lost.
From November 2000 her decline was marked. In January 2001 a biopsy revealed extensive damage to her kidneys and it was predicted that Sadie had four to eight years before her kidneys failed. In February they predicted two years; in March she was admitted and dialysis seemed imminent. But it wasn't until May 2001 that the situation became critical.
Sickness and a suffocating tightness to the chest turned out to be the symptoms of dangerously high potassium levels. Sadie's boyfriend at the time looked after her in A&E where she spent eight hours semi-conscious under an oxygen mask and numerous drips, waiting for a bed.
A catheter was subsequently plugged into her belly and she has had dialysis four times per day for 20 minutes each time ever since. While we were talking about this, Sadie remembered a primary school joke that is desperately astute:
Q: What sits at the end of your hospital bed and takes the piss?
A: A dialysis machine.
Life plans, holidays, and a career have become secondary to the full-time job of hospital visits, illnesses and staying alive.
Next came the big decision: Would she opt for a kidney or a kidney-pancreatic transplant? Opting for the former would mean that she was no longer on dialysis, while the latter would also mean that she was no longer an insulin-dependent diabetic (for six to eight years anyway - after which time the body is likely to reject the organs and she will be back on dialysis). A tough decision. But the possibility of no longer being diabetic was too strong.
Transplants aren't like normal operations. You don't get a date through the post that you can prepare yourself for. You are at the behest of some poor unfortunate whose ill fate precedes your own second shot at life: because, of course, someone must die for a transplant of this magnitude to take place. And there is no guarantee that it will be successful.
On the weekend of March 22 we got the call. It was not a good time for me: I was physically threatened by a student on Friday and broke up with my boyfriend on Saturday. Sunday began with a 7.30am phone call from Sadie asking me to get a taxi over as she was too freaked out to pack for what might amount to a month-long stay in hospital.
Sadie's to do list - 1 Have kidney-pancreatic transplant; 2 Muse on being recipient of dead person's organ; 3 Call nearest and dearest in case I die - cast a new light on my problems. She describes that day as, "The biggest, scariest adrenaline rush ever... all those months of accumulating emotional pressure were released in one terrifying jolt."
But it fell through: there was a lump on the donor's kidney. We ended up despondent and drinking brandy by 11am.
It has now been 10 months since Sadie went on the waiting list, and more than two years since she began dialysis. She wrote to me in an email: "I note with heaviness that my already compromised immune system - diabetes being an auto-immune deficient disease - is steadily weakening the longer I am on dialysis and the instance of recurrent infections/illnesses is increasing and my ability to fight them decreasing."
I have been a coward about much of this. I tend to hide behind a smoke-screen of ignorance or the clarity of emergencies. I can deal with tears shed by my otherwise unshakeable mother, or Sadie's choked calls asking me to take her to A&E, or to calm her when she is in the throes of a panic attack induced by a reaction to her drugs. I can be useful then. I can "factor these things into my life" as a friend once put it. What I can't factor into my life is the occasional wave of hopelessness at her deterioration and the brittle optimism that I often hear myself saying that Sadie will be OK.
Sadie's greatest fear is that the operation will render her a vegetable but she is usually positive.
"I think about my dreams - to travel, take off, have that sense of freedom, step on a plane with a small bag and a bottle of pills, nothing else," she wrote: "One of my life-long ambitions is to sit on a beach in Jamaica with a spliff in my hand and watch the sun set, knowing what it took for me to be able to get to that place!"
Sadie is seldom self-pitying, despite being partially sighted, despite the scars on her body that are slow to heal, the injections, the possibility of infertility, the dialysis anaemia, extreme toxic skin reactions, restricted movement due to "diabetic shoulder", the injections, blood tests, regular nausea and vomiting, and bouts of peritonitis (an infection of the area surrounding the major organs which is used for dialysis). No, she seldom allows such "irritations" to get her down and listens patiently while a friend complains about their cold or I harp on about my career or love life. Worse than all of this is the waiting. The God-awful waiting for what might not even work. The not knowing. The knowing.
So who is it am I raging against? The NHS, which doesn't have the resources to respond adequately to my chronically ill sister? The government for not legislating that, in the event of death, the kidneys of all those who have not registered their dissent be used for transplants? The unfairness of someone I love not being able to get away with the kind of "mistakes" that most of us have made? I am raging against all these things. But I am also raging against you who read this and who will briefly think to yourself, "I really must get a donor card", and then forget about it, or decide that you don't have time: because you do - it's people like Sadie who don't.
· National Transplant Week runs until July 14. To register as a donor go to www.uktransplant.org.uk or call 0845 60 60 400.
