Polycystic Kidney Disease: Care Instructions

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Your Care Instructions

Finding out that you have kidney disease can be very upsetting. It may have taken you by surprise, since kidney disease usually does not cause symptoms early on. Your diagnosis has a big effect on your family too. They may be worried and feel helpless. The more you learn about your disease, the better you will be able to get support when you need it.

There are different types of kidney disease. You have a type that causes fluid-filled bubbles (or cysts) to grow inside your kidneys. Nothing that you have done has caused them to form. You may have inherited genes that caused these cysts to grow. If they continue to grow and multiply, you may be more and more uncomfortable, and your kidneys may have problems doing their important work.

Your doctor can help you set up a treatment plan that can ease pain and help you stay active. Changes in your diet along with a good exercise program should help you stay healthy.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine. You will get more details on the specific medicines your doctor prescribes.
  • Work with your doctor and dietitian to set up a diet that will be healthy for you.
    • Your doctor may advise you to eat a low-protein diet, although this is not always recommended.
    • Eat a low-salt diet to keep your blood pressure at normal levels.
    • Your doctor may recommend that you drink extra fluids to help your kidneys flush out the wastes. Be sure to drink the amount of fluid your doctor advises.
  • Do not smoke. Smoking raises your risk of many health problems, including kidney damage. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
  • Do not take ibuprofen, naproxen, or similar medicines, unless your doctor tells you to. These medicines may make kidney problems worse.
  • You will probably feel a variety of emotions about having this disease. Talk to your doctor about joining a support group for people with polycystic kidney disease. It can be very helpful to hear how others have dealt with the same problems.
  • Have your family members tested for polycystic kidney disease. This condition runs in families. The disease can be managed better if it is found early.

When should you call for help?

Call 911 anytime you think you may need emergency care. For example, call if:

  • You passed out (lost consciousness).

Call your doctor now or seek immediate medical care if:

  • You have new or worse nausea and vomiting.
  • You have much less urine than normal, or you have no urine.
  • You are feeling confused or cannot think clearly.
  • You have new or more blood in your urine.
  • You have new swelling.
  • You are dizzy or lightheaded, or feel like you may faint.
  • You have pain in the flank, which is just below the rib cage and above the waist on either side of the back.

Watch closely for changes in your health, and be sure to contact your doctor if:

  • You do not get better as expected.

Where can you learn more?

Go to http://www.healthwise.net/patientEd

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The Health Encyclopedia contains general health information. Not all treatments or services described are covered benefits for Kaiser Permanente members or offered as services by Kaiser Permanente. For a list of covered benefits, please refer to your Evidence of Coverage or Summary Plan Description. For recommended treatments, please consult with your health care provider.