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Living by his own hand

By Cang Wei and Song Wenwei | China Daily | Updated: 2013-01-22 11:02

On March 31, 1999 - a day he says he'll never forget - his homemade hemodialysis machine, filled with purified water and drugs, started to operate in his home's bathroom, which is smaller than 5 square meters.

Every tube used for hemodialysis costs about 100 yuan. To save money, Hu uses each more than 10 times, while they're only used once in hospitals.

He doesn't share the fears of many people around about bacterial infections and pollution.

"I just need to master the drug dosages and make sure to avoid getting any air in my veins," he says.

He used ceramic bowls to pour purified water into a steel pot, and heats the medicine in the microwave.

His 81-year-old mother, Huang Zhongfang, is his only hemodialysis assistant. She uses an old wooden scale to measure the fluid with her trembling hand and then feeds it into the machine.

Wooden scales are hardly used in even China's poorest areas.

"I would have died years ago if not for this homemade machine," Hu says.

It only costs him 60 yuan per session with his homemade machine.

"The risk of self-administering hemodialysis has been exaggerated in China," he believes.

"As far as I know, many foreigners do it. But I do it because of poverty."

Hu says the machine almost killed him once.

He felt extreme pain where he had injected himself and noticed the blood in the tube had changed color.

"I knew the dose was wrong," he says. "I immediately stopped and adjusted the concentration."

Hu says he still feels afraid when he recalls the incident.

He has been visited over the years by many uremia patients, who hoped he could teach them to do their own hemodialysis.

"I refused them all," he says.

"That's only because I dare not let others take the risk I do."

Two of those patients died.

More than a million people on the mainland live with uremia, and 120,000 new cases are diagnosed every year, the Guangzhou-based Southern Weekly newspaper reports.

China's medical insurance system and expensive healthcare costs mean many patients receive ineffective treatment.

Media occasionally highlight the issue. There was a coverage spike in 2009, when a DIY hemodialysis room built by 10 patients in Tongzhou, Beijing, was exposed.

They'd cooperated to raise funds and construct three machines. The patients lived in the room in a 300-square-meter house in a remote village for three years. But the local health bureau learned about the room and shut it down.

Sun Wei, director of the nephrology department of Jiangsu Provincial Hospital of Traditional Chinese Medicine, says self-administered hemodialysis can be dangerous because of irregular operation and infection risks.

"Reusing the equipment can cause infection, especially among uremia patients, whose immune systems are usually weakened," Sun says.

Hu kept his machine secret until last July, when he uploaded an 18-minute video to the Internet in hopes the exposure would lead to assistance from the public.

"My mother is very old, and her health has been rapidly deteriorating," he says.

Living by his own hand

"She needs to be taken care of, rather than care for me. I don't know if I can survive if anything happens to her. So, I uploaded the video as a plea for help."

His video went online around the time the country was moved by story of Liao Dan, who forged a hospital's seal to save his wife, who also had uremia.

Liao, a 41-year-old laid-off worker in Beijing, defrauded the hospital of 172,000 yuan by using a fake seal to pay medical bills he couldn't afford.

He was called "the greatest scammer" by the media, and received many donations from around he country.

After he posted the video, Hu received medical insurance, which pays for some of the drugs he needs.

In November 2012, the local government also applied for his subsistence allowance. He's expected to begin receiving the 450-yuan monthly allowance this month.

"While the money still isn't enough, my family's finances are improving," Hu says.

Contact the writers through cangwei@chinadaily.com.cn.

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