Most people with diabetes would rather not think about kidney disease. But maybe they should.
About 35-45 percent of people with type 1 diabetes and 20-30 percent of those with type 2 have damaged kidneys, called diabetic nephropathy. Diabetes and high blood pressure are the two main causes of kidney disease, which afflicts more than 10 million people in this country.
“The [end stage] name no longer makes sense.”
Perhaps the best place to start learning about kidney disease is the Kidney Directions Web site. Whether you just wonder whether your are at risk of kidney disease, or your doctor told you that you have it, or you are already on dialysis, this new site packs a lot of information into its 400 Web pages.
Even better is the way it shows you that information. It's customized based on the answers you give to a few questions.
"You always have the option to go to the site map and look at anything," explains Teri Mina, the site's project manager. "But if you give us that little bit of information we can show you just the pages you need to see. We try to make some decisions for you so you don't have to. That is unique and very effective."
While the site's sponsor, Baxter Healthcare Corporation, is a leader in making dialysis equipment, it doesn't feature its products on the site and is not looking for direct financial gain.
"Our goal here is strictly to increase awareness and understanding of kidney disease so that people make good treatment choices," Teri says. "People who make good treatment choices tend to do better on whichever therapy they chose."
Your kidneys keep your blood clean and chemically balanced. They do this by filtering out waste, which your urine removes. If both of your kidneys are healthy, you have what they call 100 percent renal (kidney) function.
You might not have any symptoms of kidney disease until you have only 20 percent renal function, Teri says. This makes kidney disease particularly insidious and regular tests particularly important.
If tests show some loss of kidney function, you can control your kidney disease by following strict guidelines such as those at How to Protect Your Kidneys. The Diabetes Control and Complications Trial, a large clinical study completed in 1993, showed that intensive treatment prevented the development and slowed the progression of diabetic kidney disease by 50 percent.
The real problems come if you have less than 20 percent renal function. If it drops below 10 to 15 percent, you have what is called end-stage renal disease and have only two or three choices, Teri says.
Some people can get kidney transplants. "Then, there are two kinds of dialysis, so we prefer to think of it as three options," she says. One is called hemodialysis, where they take your blood out and cleanse it in a machine three or four times a week and return clean blood to your body, generally in a hospital. Another is peritoneal dialysis, where you put a fluid that captures waste products in your abdomen, usually at home.
Forty years ago it made sense to call it end-stage renal disease, because there wasn't anything doctors could do about it. But the name no longer makes sense.
"I think the name is horrible," Teri says. "And people in our profession are beginning to lean towards names such as chronic renal insufficiency."
Many patients believed that dialysis was essentially a death sentence, Teri says. "But you can live indefinitely on dialysis. I have spoken to people myself who have been on it for 20 years."
One visitor to the Web site wrote to thank them for their interest in dialysis patients. "I have been on dialysis for 14 years, and thanks to the advancements in dialyzers and treatment I am still going strong."
The site had been live on the Internet only for a month when Teri spoke with me. But already they had more than 1,000 registrations and at least a dozen messages, like the one above, stating what a difference it has made in their lives.
The American Diabetes Association originally published this article on its Web site as one of my “About the Internet” columns.
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