Writer Wendy Champagne delves into the harsh life of those with renal failure who are hooked up to a dialysis machine and hoping for a suitable organ donor.
At 10am Friday morning Sydney's North Shore hospital is wide awake. Ambulances move in and out of their drop-off zone like taxis at a Kings Cross ramp. Patients scatter across the concrete forecourt grasping drip stands for support as they light up the first cigarette of the day.
Inside thousands of doctors, patients, nurses, support staff, outpatients, administrators, students and visitors pump through the miles of polished lino corridors like corpuscles through giant arteries.
Walk past the information counter, back through a series of dog-legged corridors, beyond various specialist outpatient departments till you can go no further and there on the right are two heavy plastic doors.
There's no sign. "Renal medicine is not glamorous like obstetrics or heart surgery," one of the nurses says by way of excusing the partial invisibility of the Renal Department and the people whose lives depend on it.
Behind the plastic doors sixty-two year old Sunny Roden sits under a white cotton blanket, a magazine in her lap and a machine as big as a full-size television shadowing her left side.
Sunny's scarlet blood flows neatly through two plastic tubes connected from her to the machine and back again. She's s one of thirteen people "hooked up' for the first dialysis shift.
Each person sits under a blanket, in one of the over-sized vinyl armchairs lining the walls of the ward. There's a notable lack of talk and activity, the nurses move silently through the room and the patients mostly stare off into the middle distance, read or simply close their eyes during their four-hour dialysis session.
For thirteen and a half years Sunny has "hooked up" three times a week for four hours at a time and as she says, "It doesn't get any easier." In fact, for Sunny, still waiting all these years for a transplant, the prognosis just gets worse.
About Kidneys
The kidneys are the treatment plant for the body's waste - our entire blood supply circulates through the kidneys in two minutes.
Kidneys rid the body of toxic and excess waste and fluid; they regulate the blood pressure, fluid and balance chemicals in the body; produce hormones and stimulate the production of red blood cells. They are a vital organ.
The cause of kidney (renal) failure in acute cases can be as simple as becoming dehydrated after a very big night of alcohol or drugs or a severe viral infection.
Acute renal failure can weaken the kidneys in the long-term but it's usually reversible.
Chronic renal failure cannot be cured. It's an insidious condition, in many cases advancing so slowly it isn't detected until it is too late. In the worst case scenario, without rapid intervention, waste and chemicals build up in the bloodstream poisoning the body, and excess fluid collects until it causes heart failure. This happens in a matter of days.
Once you enter what's referred to as End Stage Renal Failure (ENRF), the worst case scenario is with you every day of your life and the only options are dialysis or transplant. And life on dialysis can be living hell.
When Mark Cox, National Director of Transplant Australia, was diagnosed with renal disease he was 23 years old. He was in New York playing the tennis circuit and he flew home to Australia. A year or two later, after the complete failure of his kidneys, he ended up on dialysis for a year-and-a half before his first transplant.
"It's a shocking, shocking existence," he says of the experience, "one that you wouldn't wish on anybody."
There are currently over 5500 renal patients around Australia undergoing one of two types of dialysis.
The first, hemodialysis, filters the patient's blood - a procedure that takes up to six hours for a healthy person (who tends to eat more forbidden foods than sick patients) and four hours for others.
The blood is withdrawn from the body through a vein via a quarter inch canular and restored through another.
This process slowly destroys veins and long-term dialysis people like Sunny incur scars and collapsed veins and often undergo numerous skin grafts during the course of their treatment.
The alternate process is peritoneal dialysis - a procedure where a dialysis solution is constantly introduced via catheter into the peritoneal (abdominal) cavity and fluid and waste products are removed.
Peritoneal dialysis is good for children being treated at home and people who are on the move, but because of the build-up of scar tissue and high rates of infection there's a time limit of about five years on the treatment.
"Transplant is the preferred option for renal patients," says Dr John Marnie, transplant physician and one of Australia's foremost renal specialists, "but it isn't an easy one."
For a start, people have to be fit. Next, you have to find a donor and the process of matching a donor with a recipient, according to Dr Marnie, is like matching the balls in a Lotto game but instead of five numbers to match there are over ninety.
"Imagine flying to Singapore three times a week," says Dr Marnie, "that's how much time a renal patient spends hooked-up." And it's not just the time, nor the pain and discomfort of dialysis, nor the despair of waiting that renal patients contend with daily; there's also severe social implications involved with long-term treatment.
Over a period of time, as the body weakens, many kidney patients have to give up their jobs and join the welfare lines; they suffer extreme fatigue, their bones start disintegrating and then there's the diet.
"Whatever they drink stays in their bodies," says Kay McLaughlin a clinical nurse specialist and educator who has worked with renal patients for the past 14 years. So in this age when every dietary expert is admonishing us to drink more water, renal patients can only drink 500mls a day and that includes the water added to pasta or rice, or even the juice inside a single grape.
Sunny has to boil her vegetables three times and then squeeze out the water to rid the food of potassium. All fruits, juices, vegetables, milk, chocolate, nuts - everything good, according to Sunny - contains potassium which becomes a deadly substance for someone with kidney failure. It builds up in the bloodstream causing hypertension and heart failure.
On the other hand foods devoid of nutrition, like white bread and lollies, are fine. Holidays, restaurants, even pregnancy are out for many renal patients, as is alcohol and intense exercise.
Many younger patients continue for as long as possible with their 'normal lives' hoping for a donor. But some older patients withdraw from treatment.
"One day they just don't show up for their dialysis," says Kay, preferring the option of a quiet death to the pain of keeping their bodies alive and their spirits up. "Dialysis is just a stop-gap treatment to keep people alive before transplant," says Mark Cox.
And while the official wait for a transplant is 3 years, in reality there are many thousands of people who wait much longer. People like Sunny Roden, whose whole life is given over to waiting.
Prevention - Have regular blood pressure and urine checks
- Watch for swelling of the extremities, nausea and vomiting, shortness of breath, muscle cramps and general fatigue.
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References:
The Renal Department of North Shore Hospital. Thanks to Dr John Marnie, Sister Sally Bristow, Nurse Kay McLaughlin and renal patient Sonny Roden
Mark Cox: Transplant Australia 02 9948 2690
