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...everything you need to know about doing dialysis at home.
When you know your kidneys are failing, it’s normal to want to put off dialysis forever. Common wisdom used to say that starting dialysis early was best for you. The funny thing about common wisdom, though, is it could turn out to be wrong. Research now suggests that putting off dialysis as long as you can may be the safer choice.
The National Kidney Foundation’s (NKF) guidelines1 have divided chronic kidney disease (CKD) into five stages based on glomerular filtration rate (GFR), roughly the measure of your percent kidney function:
|Stage of CKD||GFR (mL/min)||Action to take|
|1||≥ 90||• Diagnose and treat the kidney problem
• Treat other illnesses
• Slow the rate of CKD
• Reduce your risk of heart disease
|2||60–89||• Estimate the rate at which your CKD is progressing|
|3||30–59||• Evaluate and treat any complications|
|4||15–29||• Prepare for transplant or dialysis|
|5||< 15||• Start dialysis or get a transplant (if uremia is present)|
Uremia is a build-up of wastes in the blood. As kidneys fail, this build-up of wastes and excess water in the blood causes symptoms, like:
The symptoms people have as their kidney function gets worse can vary a lot. Some people even feel fine and report no symptoms. For many years, the choice of when to start dialysis was as much an art as it was a science. Doctors would decide with their patients when blood test values and symptoms warranted starting treatment.
When the NKF guidelines came out in 1996, doctors began to say that CKD 5 was kidney failure. When the GFR dropped to 15 mL/min, dialysis should start.2 It was clear, even then, that not eating enough protein was very dangerous for people with CKD. People who were malnourished lived longer when they started dialysis sooner. But this was not true for those who ate well.3
In 2004, researchers began the Initiating Dialysis Early and Late (IDEAL) study.4 The plan was to recruit 800 people with CKD and follow them for three years to find out who would live longer:
The findings of the IDEAL study are now out,5 and they are not what most nephrologists expected. Of the 828 people who were randomly chosen to start treatment early or late:
There was no significant difference in survival between the two groups. And, the late-start group got to have an extra six months or so off of dialysis!
Three other non-random studies have found that starting dialysis early does not help you—and it may even be harmful.
Based on these studies, a new position statement from the UK9 says dialysis needs to start with a GFR of 6. It can start sooner if there are symptoms of uremia. People at high risk (with diabetes or heart disease) may also want to start sooner. And, there are steps you can take to boost your chances of feeling well as long as possible.
A number of studies have found that people with CKD who see a nephrologist (kidney specialist) do better. A nephrologist can:10
Seeing a nephrologist early can help give you the best chance of slowing your CKD. A 1999 study looked at 135 people whose kidneys failed.11 The 105 who saw a nephrologist at least four months prior to starting dialysis:
A larger study of 2,264 people looked at those who saw a nephrologist at least twice in the year before dialysis vs. those who didn’t. Those who did see one were much likelier to be alive two years later.12
Sometimes people don’t want to make a fuss and ask the doctor’s office for their blood test results. But those results belong to you—and you need them to know how you’re doing.
If you know your serum creatinine (a waste removed by healthy kidneys) level, for example, you can learn your GFR. A number of online calculators will help you figure it out. Type “GFR calculator” into Google and take your pick.
Some people keep a notebook, either on paper or on a computer, to track their lab test results. This is a good way to keep track of your medications, too.
You are an expert in you—how you feel from day to day, what makes you feel better or worse, etc. Learn the symptoms of CKD and observe yourself to see if you have any of them. If you do, make a note of them for your doctor. Be sure to include things like:
When your kidneys are failing, you may not want to eat protein (meat, eggs, chicken, etc.). This can be a symptom of uremia. You need to get some protein, however. In a large U.S. study, people with CKD who ate a very low-protein diet did not live as long as those who ate more.13
People often want to know what they can eat to fix their kidneys. There are no magic foods that will do this—so use common sense. Fresh foods, like vegetables and fruits, are better for you than processed or fried foods. The fewer ingredients a food has, the closer it is to being real food.
In a small study, a diet free of gluten (found in wheat) was found to protect the kidneys of children who had diabetes and Celiac disease.14 A number of other small studies have also suggested that there may be a link between gluten and kidney disease.
You may not need to start dialysis or get a transplant until you have a GFR of 6 and if you don’t have symptoms. But if you’ll need dialysis, you need a way to get access to your blood so it can be cleaned. You do not want to start treatment with a central venous catheter (CVC) if you can help it.
A CVC is a plastic tube that is placed in a central vein in your chest, with the tip inside your heart. Two “ports” dangle outside of your skin. Because it is both outside and inside your body, a CVC is an open door for germs. The risk of sepsis (blood poisoning), which can be fatal, is far higher with a CVC than with other, better types of access for hemodialysis. The NKF guidelines suggest getting an access at stage 4 CKD. This allows time for it to heal and be ready to use when the day to start treatment comes.
Better choices for dialysis access are:
Talk with your doctor about your health—and when to start dialysis or get a transplant, based on your blood tests and symptoms. It may be later than you think.
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