ADPKD is an inherited condition that causes cysts to grow in the kidneys. Over the years, the cysts can damage much of your kidney tissue and make your kidneys very large.

These changes to the kidneys can lead to infections, bleeding, kidney stones, pain and other symptoms in some people. These can be treated but they sometimes recur. Pain can be difficult to treat.

Eventually, damage caused by ADPKD can cause the kidneys to fail. People with ADPKD generally get kidney failure in their late 50s, but this differs from person to person. Some never get kidney failure.

If your kidneys fail, you’ll need dialysis or a kidney transplant to survive.

If you’re going to have a kidney transplant, your kidney specialist (nephrologist) and a surgeon might recommend removing one or both of your own kidneys too. This is called nephrectomy.

They’ll only recommend this if one or both of your own kidneys is causing severe problems, as we explain later.

No. A person’s kidneys are only removed when this is necessary. Many people with ADPKD who have had a kidney transplant still have their own kidneys.

Reasons that you might have one or both kidneys removed include:

• It would not be possible to fit in a kidney transplant otherwise.
• You have kidney cysts that keep getting badly infected or keep bleeding.
• You have kidney stones causing symptoms.
• Your kidneys are causing unbearable pain and other treatments haven’t worked.
• Doctors think you could have kidney cancer.
• Your enlarged kidneys have caused a hernia (meaning part of your bowel is bulging through your abdominal muscles) or other severe symptoms.

Nephrectomy is only done when necessary because:

• It’s major surgery and the procedure has risks.
• Even if your kidneys are not working well to remove waste from your blood, they often still help to remove extra fluid.

If you need a nephrectomy, your surgeon will remove only one kidney, not both, if possible. They’ll do the operation during or after your kidney transplant operation (rather than before) if they can.

It’s unusual to have your kidneys removed before a transplant is scheduled. This is only done if there is an urgent need.

Your surgeon will talk you through the technique they’ll use to remove your kidney (or kidneys). You’ll need a general anaesthetic and your surgeon will probably need to make a large cut in your abdomen. This is called ‘open surgery’.

Surgeons tell us that keyhole surgery (laparoscopy) is usually not possible because ADPKD can make kidneys very large.

After the operation, you’ll have some pain. You’ll be given pain killers for this.

You’ll need to stay in hospital for about 7–10 days and will need a further 6–8 weeks to fully recover at home.

Common risks and side effects of surgery to remove a kidney (or both kidneys) include pain, bloating, or an infection.

Occasionally, a nearby organ or blood vessel can be damaged, or you could get a hernia (where part of your bowel bulges through your abdominal muscles). You might need further surgery for these complications.

More serious problems — such as severe bleeding or blood clots — are rare.

People can get low blood pressure after having their kidneys removed. Surgeons tell us that, uncommonly, this can affect the success of a kidney transplant.

Nephrectomy is a major operation, so be sure that your surgeon explains the risks and benefits to you. Your surgeon will perform the operation extremely carefully to minimize risks.

• Progression of ADPKD
• Kidney transplantation
• Introduction to Dialysis

The Newcastle upon Tyne Hospitals NHS Foundation Trust has information on open surgery to remove a kidney.