Sharing life with the machine

Patricia LeBlack was given 10 years to live when she was diagnosed with kidney failure, but now, 38 years later, she may be the…

Patricia LeBlack was given 10 years to live when she was diagnosed with kidney failure, but now, 38 years later, she may be the longest surviving dialysis patient in the world, writes Emine Saner

Attached to a machine with tubes disappearing into her arm, Patricia LeBlack, dressed in a loose cotton top that keeps slipping off her narrow shoulder, might look frail but when she speaks there is nothing feeble about her.

She shouts to the man in the bed opposite hers on the renal ward of the Royal Free hospital in London and jokes with the staff, who call her "Mama".

She has known many of them for years but the younger staff were not even born when LeBlack started her treatment.

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Her survival has been remarkable. This is her 39th year of continuous kidney dialysis and her doctors believe she is the longest-surviving dialysis patient in the world. When LeBlack was first diagnosed with kidney failure at the age of 27, her doctors gave her 10 years to live.

This year she celebrated her 65th birthday. It is difficult to give an average survival time for dialysis patients as so much depends on age and health. Many are elderly when they start dialysis and so they don't live long, but an otherwise healthy person starting dialysis in their 20s can expect to live upwards of 20 years without a transplant.

LeBlack came to London from Guyana in 1963 to train as a nurse, but when she arrived there were no places left on the course she had planned to take. Instead, she got a job at a brewery in King's Cross. LeBlack then became pregnant but didn't stay with the baby's father.

It was while she was pregnant that her doctor discovered that both of her kidneys were not functioning properly.

Renal failure can happen for a number of reasons - after an operation or an accident, as a side effect of medication or a complication of diabetes - but nobody knew why LeBlack was suffering from it.

By the time her son, Tilton, was three years old, her condition had deteriorated so badly that her eyesight was affected and she could hardly eat or walk. Her friends took her to hospital.

There she was put on a dialysis machine, which works as an artificial kidney. She was lucky, says Dr Rosemarie Baillod, the renal physician who treated LeBlack.

"Dialysis was hard to come by in those days. I would get four to six patients a month and a committee would select one for treatment.

"Patricia . . . was single and she had no support whatsoever. It would have been difficult to turn her away. The idea of keeping someone on long-term dialysis was still new and we didn't know how long people could survive on it for. Then, people thought they wouldn't live - now they expect to.

"Our early patients knew they were special, that they had been given a chance."

After five months in hospital, LeBlack was allowed to go home, but her doctors were not sure she could survive for long.

"It made no sense to cry about it. I thought, that's okay . . . I got myself together," she says matter-of-factly.

But despite her brave face, there are many things LeBlack has missed out on. She hasn't had a long-term partner or more children; childbirth can be dangerous for women with kidney failure. She has never been on holiday because she has to go to hospital three times a week. She is not allowed to drink more than two cups of water, or the equivalent, a day because the excess fluid could put pressure on the heart and lungs.

She must avoid fruit because of its high water content. Nor can she eat food containing salt, potassium or much protein.

LeBlack was told she might be able to have a transplant but didn't want one. Baillod remembers LeBlack being adamant, saying, "you're not experimenting on me".

Baillod, who is now retired, puts LeBlack's survival down to her self-discipline. "She knew what was asked of her in terms of her lifestyle and she knuckled down and did it. She's a real battler."

Despite her upbeat attitude, LeBlack seems tired.

"The machine is keeping me alive but it causes other problems. My bones ache; I've got arthritis in my hands. But I can't imagine what it's like not to share my life with this machine."

She adds, with a sly smile: "We're very attached."