Carol Harris 

So easy you can do it with your eyes closed

Kidney dialysis needn't mean a complete end to freedom: liberation is at hand with a groundbreaking nighttime treatment you can use in the comfort of your own home.
  
  


Kidney disease can take over your life. Ask Patrick Pearson-Miles. When, in 1982, as a sporty 17-year-old, he developed nephrotic syndrome, in which protein leaks from the kidneys into the urine, it was a profound shock to become so ill.

Drug therapy and peritoneal dialysis, in which blood is cleaned regularly throughout the day via a catheter in the abdomen, failed. Even a transplant - using one of his mother's kidneys - could not halt the disease. So in 1994, he began haemodialysis. His diet was severely restricted, and for several days each week he had to hook up to a dialysis machine - effectively an artificial kidney that removes waste products and excess water directly from the blood, usually through a needle in the arm.

"I immediately opted to do it at home," says Pearson-Miles, now 41. "Hospital dialysis takes a lot longer because of the travelling, and waiting for a nurse and machine to be free. At that stage, once I learned to stick the needle in on my own, I would do three hours of dialysis on a Monday afternoon and evening, five hours on a Wednesday, five hours on a Friday and four on Sundays. It took an average of one and a half hours to set up and an hour to clear up afterwards, so it restricted my life enormously."

Fortunately, he was being treated at Guy's hospital in London, where a three-year modernisation initiative, funded by a £15m grant from the Guy's and St Thomas's Charity, is changing services by involving patients and health professionals in new approaches to treatment. Kidney disease is one of its three priorities - stroke and sexual health are the others - and it was immediately obvious that nocturnal haemodialysis, an approach used in Holland for the past three years, could potentially make a huge difference to patients.

Essentially, nocturnal haemodialysis means you can do it while you sleep. There is also some evidence that it can mean lower death rates. True, some kidney patients can do peritoneal dialysis at night. But as Colin Jamieson, home haemodialysis charge nurse at Guy's hospital, explains, that treatment is more problematic. "People having peritoneal dialysis often don't feel well, as it's not as good at clearing the toxins as haemodialysis," he says. "Added to that, patients still have to limit their diet and it only works for a maximum of about five years."

Modernisation

The modernisation initiative organised a day trip to Holland, to look at the nocturnal haemodialysis technique and meet staff and patients who were using it. Pearson-Miles and his wife, Philippa, were in the group, along with Jamieson and other clinical and technical staff from Guy's.

"I opted for nocturnal dialysis that day," Pearson-Miles says. "I met a patient who had had several transplants and she raved about nocturnal dialysis, to the extent that she had turned down a further transplant." Jamieson was also impressed. "I went over wondering whether this was for us;" he recalls. "Coming back, I thought we could have it up and running within a month.

"But it was very frustrating at first. There were a lot of quite minor variations in the equipment, but the differences these made took ages to resolve. The manufacturers were no help at all, so I was contacting the team in Holland daily."

Although Pearson-Miles was accustomed to daytime haemodialysis at home, under the Guy's programme the nocturnal version posed different challenges - not least the use of a single, significantly larger needle. "Patrick and his wife were keen to learn the technique," says Jamieson. "So, for a week, I would come into the unit at Guy's about 7.30pm and Patrick would arrive at about 8.30. Philippa came in some nights as she had to learn how to strap the needle securely."

The procedure was not as different as Pearson-Miles had expected. "The needle is not especially long, but it is quite thick," he says. "My main concern was that it would fall out. But in nocturnal dialysis, you have a little sensor that bleeps to wake you up if that happens." In fact, says Pearson-Miles, the sensor is very sensitive: it is rather like having a newborn baby sleeping in the room with you.

"I use the machine for six nights a week. I start setting up at 9pm, I'm on it by 10.30 and off it by 6.30am. If I go out, I know I must be back by nine to set it up, but the only real drawback is that sometimes, if you get the alarm going off during the night on consecutive nights, you can get quite tired from a poor night's sleep."

Pearson-Miles was a marine insurance broker at Lloyd's until 1993, when he was forced to give up work because of his condition. After a period of unemployment, he has recently been working part-time and is now setting up a corporate event photography business with a partner. Nocturnal dialysis means his working days are clear.

Compared to conventional haemodialysis, the nocturnal process cleans the blood more gently over a longer period. Many people with kidney disease have to take beta blockers to counteract elevated blood pressure, but Pearson-Miles's rate has come down to normal without them. "I have now seven free days each week," he enthuses. "The difference is amazing. Apart from the free time, my diet used to be really restricted, but now I can eat most foods. One of the first things I had was a homemade banana milkshake - completely banned before because they are so high in potassium."

A patient having regular haemodialysis also has to limit daily fluid intake to half a litre. So it was with something to celebrate that, as Pearson-Miles says, "I had my first pint of bitter for 12 years."

 

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