Newly diagnosed chronic kidney disease (CKD)

What are the first signs of kidney problems?

In the early stages of kidney disease you may not have any signs or symptoms. In time, your kidneys work less well to filter waste and fluids out of your blood. In later stages of kidney disease, you may notice symptoms, including:

• Itching
• Muscle cramps
• Feeling sick to your stomach or throwing up
• Not feeling hungry
• Swelling in your feet and ankles
• Urinating more or less often than usual 
• Trouble catching your breath 

• Trouble sleeping 

If your doctor has told you that you have CKD, there is a lot you can do to learn about your condition, take charge of your medical care and slow the damage to your kidneys.

Get to know your CKD stage and test results

When you have CKD, it is important to know what stage you are in and what caused your kidney disease. Your doctor will do tests and exams to find out how well your kidneys still work to filter wastes and fluid from your blood. These include: 

• A physical exam: doctors will measure your height and weight, take your blood pressure and listen to your heart. They may perform other exams too. 
• Blood tests: to help find out how well your kidneys still work, doctors will measure the amount of waste in your blood that would normally be filtered out by your kidneys, such as creatinine and urea. They may also look at your blood sugar, cholesterol and electrolytes like potassium and sodium.
• Urine (pee) tests: doctors will measure the amount of a protein called albumin in your urine. A high level of albumin may be a sign of CKD.

• Imaging tests: your doctor may order imaging tests for you, such as a CT scan or MRI, to look at your kidneys.
• Kidney biopsy: a biopsy is a procedure where your doctors take a very small piece of your kidneys to look at it closely under a microscope.

The results of these tests will show: 

• The amount of damage to your kidneys 
• Your eGFR (estimated glomerular filtration rate), which shows how well your kidneys still work to filter waste and fluid out of your blood
• Clues about what may be the cause of your kidney disease

Become an expert on your CKD numbers

Learn what stage of CKD you are in. Your doctor will repeat these tests to look for changes in time. Work with your doctor to learn your numbers for your blood and urine tests, blood pressure and eGFR and what they mean. For example, if you keep track of your eGFR number and you see that it has gone down, bring this up with your doctor.   

This knowledge will help you take charge of your health care and make choices about your treatment that you can feel good about. 

Take charge of your health care

You and your doctor will work together to make a plan to manage and treat your kidney disease. The goal is to help you feel as good as possible and slow the damage to your kidneys. Here are some tips to help you feel confident in your treatment plan: 

• Follow your doctor's instructions. Your doctor may prescribe medicines, recommend changes to what you eat or tell you to make other changes to your daily habits. 
• Ask questions, get answers. If you do not understand your treatment plan, or you are not sure you can follow it, speak up! Ask your doctor to explain it a different way, or talk to them about what might keep you from following their instructions. Ask questions about your tests and treatments, such as:
  • What tests do I need and how often will I have them? 
  • What treatments will I need? Do they have any side effects? 
• Know when to see a nephrologist. Your doctor may tell you to see a special kidney doctor, called a nephrologist. Many people begin seeing a kidney doctor when their eGFR is below 30, which is Stage 4 CKD, but ask your doctor when is right for you. 
• Keep track of your medicines. Make a list of all medicines you take–even ones that are not for kidney disease–and bring it to your next doctor visit. There are some medicines people with CKD should not take. 
• Write down your symptoms or changes. You know your body best. Keep track of how you are feeling every day. Write down any symptoms you have or changes in how you feel–even if they do not seem like they are related to kidney disease. Bring these changes up with your doctor. 

• Plan ahead. The goal of CKD treatment is to slow the damage to your kidneys and keep them working as well as they can for as long as possible. In time, though, many people's kidneys work less and less well, leading to  kidney failure. If this happens, you will need dialysis or a kidney transplant. Learn about these treatments and think about what you would do if you need them. Patients with eGFR ≤20 ml/min/1.73 m2 can get a referral to for a kidney transplant evaluation. Ask your nephrologist for a referral.
• Ask for help. Learning that you have CKD can come as a shock. Your doctor may tell you that you suddenly need to make big changes in the way you live. Many people struggle with these changes. This is normal. You can learn more about the link between mental health and kidney disease here. Reaching out and getting support can help you deal with all these changes and feelings that may come along with them. 

Build a support system

Remember–you are not alone in living with kidney disease. Get support from people around you:

Teach your family and friends what you have learned about CKD so they can better understand what you are going through.

Do not be afraid to ask for help when you need it. You may need a ride to a doctor appointment or help with chores if you are feeling tired. 

Make a list of people who can help and their phone numbers and keep it handy.

Support groups for people with kidney disease can be a welcoming place to talk about your experiences and feelings. Like our Facebook page to connect with people just like you–they can offer advice and support about everyday life with kidney disease. 

You can also find support groups on the American Association of Kidney Patients website.