Frequently-Asked Questions about CKD
When people are told they have chronic kidney disease (CKD), the first questions they often have are "How long will I live?" and "How well will I live?" This section answers these and other questions about CKD, while also presenting thoughts from patients.
- How long can I live with chronic kidney disease?
- How good will my life be with CKD?
- Can I still have a good life if I need dialysis?
- I'm tired all the time. Is there a treatment for fatigue?
- How can I keep my kidneys working as long as possible?
- Should I keep working?
- What questions should I ask my doctor?
- Where can I find out more information about chronic kidney disease?
Q: How long can I live with chronic kidney disease?
A: Many people think that if their kidneys fail, they will die. Right away. This used to be true—50 years ago. Back then, there were not enough dialysis machines to go around and medical knowledge about kidney disease was limited. It is no longer true today.
How long you can live with CKD depends on your age, other health problems, and how involved you become in your care. Most people with early CKD will never have kidney failure. Others will reach kidney failure and may live for decades with dialysis or kidney transplants.
There are major advances in today's healthcare. We have better drugs, know more about how to slow down kidney failure, and have updated dialysis machines. But the most important factor is still the person who has the disease. Research shows that people who become partners in their care live longer. So, ask questions, and explore with your doctor and care team the best way for you to help manage your disease.
Q: How good will my life be with CKD?
A: How good your life can be with CKD depends on YOU! In the early stages, CKD may have symptoms that are so subtle you may not even notice them. In later stages, fatigue, itching, loss of appetite, and other symptoms can reduce your quality of life—if you don't act. How? All of these symptoms can be treated.
Learn what to watch for and tell your doctor, so you can get the help you need. You can also keep a good quality of life by following your treatment plan. For example, taking your medications in the right doses at the right times may help slow your kidney disease. Your quality of life with CKD depends on your attitude, and how you accept the changes and take control of your health and your life.
Q: Can I still have a good life if I need dialysis?
A: Yes, you can live long and live well with dialysis. Many people—even those with loved ones on dialysis—don't know that there are many types of dialysis. You can choose a treatment that lets you keep doing all or most of the things you value.
People who are very sick before they start dialysis are often surprised to find that they feel much better a few weeks or months later. The unknown you imagine is often much scarier than the reality. Learn all you can, and talk to people who are doing well—like people who do their treatments at home, or while they sleep. You'll see that you can have a good life on dialysis.
Q: I'm tired all the time. Is there a treatment for fatigue?
A: Even healthy people complain of being tired. But people with CKD can be so exhausted that they fall asleep during the day—even after 8 to 10 hours of sleep at night. One reason for fatigue can be anemia, a shortage of oxygen-carrying red blood cells. People with CKD often have anemia because damaged kidneys make less of a hormone called erythropoietin (epoetin, or EPO). EPO tells the bone marrow to make new red blood cells. Without a fresh supply of red blood cells, the body has less oxygen. This makes you more tired and cold, and less able to focus and fight disease. If your fatigue is due to anemia, your doctor may prescribe iron and injections of a man-made form of EPO.
Q: How can I keep my kidneys working as long as possible?
A: There are a number of treatments, including medications and lifestyle changes, that may help keep your kidneys working longer. People can even get transplants before having dialysis, especially if they have a willing living donor. Ask your doctor what would help you. To learn more about possible treatments, see Chronic Kidney Disease: What You Can Do.
Q: Should I keep working?
A: Yes! Most people find that disability pays much less than working—but their bills don't go away just because they're ill. If you have CKD and a job, try to keep it if you can, or find a new one. Work can make you feel like you're still you, and that you are still helping to support your family. Work may also be a vital part of your social life. If your job comes with a health plan, it can also help you get good care and pay for prescription drugs.
If you find that you feel too tired to work, see your doctor! Fatigue can be caused by anemia, which can be treated. Ask your employer if you need an accommodation—more breaks, a different shift time, or energy-saving devices to keep your job. You can find helpful information about employment support programs, laws, and resources to help people with disabilities on the Social Security website.
Q: What questions should I ask my doctor?
A: No two people are alike. Asking questions is the best way to find out about your health. On this Life Options website, you can download a Patient Interest Checklist that will help you figure out what to ask.
You'll also find a few basic ideas below, and you can add your own. If you write your questions and show the list to your doctor, you may be more likely to get them answered. Write down the answers, too—or have someone come along to help you remember the answers.
- What percent of kidney function do I have now?
- What is the cause of my kidney problem?
- What are my lab test results right now?
- What can I do to keep my kidneys working as long as possible?
- What treatment can I get for my symptoms? (List symptoms)
- What are the next steps for my treatment?
- Will I need dialysis or a transplant? If so, how long might it be until I do?
Q: Where can I find out more information about chronic kidney disease?
A: Asking questions and getting them answered—by a healthcare professional or in a book or other reliable source—is a key part of doing well with any chronic disease. Here are some thoughts:
- Ask your care team to teach you about your condition and to give you any information they have. Never feel shy about coming to a clinic visit with a list of questions—and write down the answers.
- Visit the Medical Education Institute's FREE Kidney School—16 modules of self-paced learning on kidney topics from nutrition to anemia to lab tests and much more.
- At this Life Options website, we have a long list of kidney links and many booklets and fact sheets about kidney disease that you can read or download.
- The library is another option.
- Visit the National Kidney Foundation (NKF)
- Join the American Association of Kidney Patients (AAKP)
- Learn more about transplant from the United Network for Organ Sharing (UNOS)
- Depending on the cause of your kidney problem, there may be another organization to help you—type your diagnosis into Google to learn more.