For polycystic kidney disease, certain tests can detect the size and number of kidney cysts you have and evaluate the amount of healthy kidney tissue, including:
- Ultrasound. During an ultrasound, a wandlike device called a transducer is placed on your body. It emits sound waves that are reflected back to the transducer — like sonar. A computer translates the reflected sound waves into images of your kidneys.
- CT scan. As you lie on a movable table, you're guided into a big, doughnut-shaped device that projects thin X-ray beams through your body. Your doctor is able to see cross-sectional images of your kidneys.
- MRI scan. As you lie inside a large cylinder, magnetic fields and radio waves generate cross-sectional views of your kidneys.
The severity of polycystic kidney disease varies from person to person — even among members of the same family. Often, people with PKD reach end-stage kidney disease between ages 55 to 65. But some people with PKD have a mild disease and might never progress to end-stage kidney disease.
Treating polycystic kidney disease involves dealing with the following signs, symptoms and complications in their early stages:
Kidney cyst growth. Tolvaptan therapy may be recommended for adults at risk of rapidly progressive ADPKD. Tolvaptan (Jynarque, Samsca) is a pill that you take by mouth that works to slow the rate of kidney cyst growth and the decline in how well your kidneys work.
There's a risk of serious liver injury when taking tolvaptan, and it can interact with other medicines you take. It's best to see a doctor who specializes in kidney health (nephrologist) when taking tolvaptan, so that you can be monitored for side effects and possible complications.
High blood pressure. Controlling high blood pressure can delay the progression of the disease and slow further kidney damage. Combining a low-sodium, low-fat diet that's moderate in protein and calorie content with not smoking, increasing exercise and reducing stress may help control high blood pressure.
However, medications are usually needed to control high blood pressure. Medications called angiotensin-converting enzyme (ACE) inhibitors or angiotensin II receptor blockers (ARBs) are often used to control high blood pressure.
- Declining kidney function. To help your kidneys stay as healthy as possible for as long as possible, experts recommend maintaining a normal body weight (body mass index). Drinking water and fluids throughout the day may help slow the growth of kidney cysts, which in turn could slow down a decline in kidney function. Following a low-salt diet and eating less protein might allow kidney cysts to respond better to the increase in fluids.
- Pain. You might be able to control the pain of polycystic kidney disease with over-the-counter medications containing acetaminophen. For some people, however, the pain is more severe and constant. Your doctor might recommend a procedure using a needle to draw out cyst fluid and inject a medication (sclerosing agent) to shrink kidney cysts. Or you may need surgery to remove cysts if they're large enough to cause pressure and pain.
- Bladder or kidney infections. Prompt treatment of infections with antibiotics is necessary to prevent kidney damage. Your doctor may investigate whether you have a simple bladder infection or a more complicated cyst or kidney infection. For more complicated infections, you may need to take a longer course of antibiotics.
- Blood in the urine. You'll need to drink lots of fluids, preferably plain water, as soon as you notice blood in your urine to dilute the urine. Dilution might help prevent obstructive clots from forming in your urinary tract. In most cases, the bleeding will stop on its own. If it doesn't, it's important to contact your doctor.
- Kidney failure. If your kidneys lose their ability to remove waste products and extra fluids from your blood, you'll eventually need either dialysis or a kidney transplant. Seeing your doctor regularly for monitoring of PKD allows for the best timing of a kidney transplant. You may be able to have a preemptive kidney transplant, which means you wouldn't need to start dialysis but would have the transplant instead.
Aneurysms. If you have polycystic kidney disease and a family history of ruptured brain (intracranial) aneurysms, your doctor may recommend regular screening for intracranial aneurysms.
If an aneurysm is discovered, surgical clipping of the aneurysm to reduce the risk of bleeding may be an option, depending on its size. Nonsurgical treatment of small aneurysms may involve controlling high blood pressure and high blood cholesterol, as well as quitting smoking.
Early treatment offers the best chance of slowing polycystic kidney disease progression.
Coping and support
As with other chronic illnesses, having polycystic kidney disease might feel overwhelming. The support of friends and family is important in dealing with a chronic illness. In addition, a counselor, psychologist, psychiatrist or clergy member may be able to help.
You might also consider joining a support group. Although not for everyone, support groups can provide helpful information about treatments and coping. And being with people who understand what you're going through might make you feel less alone.
Ask your doctor about support groups in your community.
Preparing for your appointment
You're likely to start by seeing your primary care provider. However, you might be referred to a doctor who specializes in kidney health (nephrologist). You may benefit from starting a specialized treatment early on in the course of the disease, even if blood tests show that you still have normal kidney function.
Here's some information to help you get ready for your appointment.
What you can do
When you make the appointment, ask if there's anything you need to do in advance, such as fasting before having a specific test. Make a list of:
- Your symptoms, including any that seem unrelated to the reason for which you scheduled the appointment, and when they began
- All medications, vitamins and other supplements you take, including dosages
- Your and your family's medical history, particularly kidney diseases
- Questions to ask your doctor
Take a family member or friend along, if possible, to help you remember the information you receive.
For polycystic kidney disease, questions to ask your doctor include:
- What's the most likely cause of my symptoms?
- Are there other possible causes for my symptoms?
- What tests do I need?
- Is this condition temporary or chronic?
- What's the best course of action?
- What alternatives are there to the approach you're suggesting?
- I have other health conditions. How can I best manage them together?
- Do I need to restrict my diet or activities?
- Are there brochures or other printed material that I can take? What websites do you recommend?
Don't hesitate to ask other questions.
What to expect from your doctor
Your doctor is likely to ask you questions, such as:
- Have your symptoms been continuous or occasional?
- Does anything seem to improve or worsen your symptoms?
- Do you know what your blood pressure normally is?
- Has your kidney function been measured?