Preparing For Your Doctor Visit

ADPKD IS A SERIOUS CONDITION THAT DAMAGES YOUR KIDNEYS, EVEN WHEN THERE ARE NO SIGNS OR SYMPTOMS.

Screening for ADPKD

If there’s a chance you or a loved one has ADPKD, it’s important to find out for sure. The earlier you know, the sooner you and your healthcare provider can decide on a plan for taking care of your kidneys.

That’s why you should talk to your healthcare provider about getting an ADPKD screening. Your primary care physician will most likely order the screening tests. If you are diagnosed with ADPKD, you may be referred to a nephrologist (a kidney doctor) to discuss how to manage your care. You’ll also want to work closely with any other doctors who are part of your healthcare team.

If you’ve already been diagnosed with ADPKD, you should also encourage your family members to get tested early. After all, the first step in fighting the disease is getting diagnosed.

How is ADPKD diagnosed?

Once you or a family member decide to be tested for ADPKD, your primary care physician or nephrologist can help you decide which of the following screening methods is best for you.

More people have an ultrasound to diagnose ADPKD than any other test. An ultrasound is usually done in the doctor’s office or an office that specializes in medical imaging. It works by passing sound waves through the body to create a picture, so it’s noninvasive. Ultrasound imaging doesn’t use dyes or radiation either, so it’s a safe option, even for pregnant women.

A computed tomography (CT) scan is a type of medical imaging that uses X-rays to create cross-section pictures of the body. It uses radiation and a contrast dye to give a clear picture of the cysts that are harming your kidneys. This imagery is more exact than an ultrasound.

Magnetic resonance imaging (MRI) uses magnetic fields and radio waves to take pictures inside the body. An MRI doesn’t use radiation or dyes like a CT scan, but it can still make cysts easier to see than ultrasound testing.

Because ADPKD is a genetic condition, genetic (or DNA) testing may be something you want to consider. Genetic testing may also be able to identify the disease earlier than imaging tests. Your healthcare provider can help you decide if genetic testing is right for you. There are 2 types of genetic tests that you can talk about with your healthcare provider:

  • Gene linkage testing: If you know members of your family have ADPKD, gene linkage testing is a great way to tell if someone else has inherited the disease. It begins by comparing the DNA of your diagnosed family members with those who have not been diagnosed. If the test finds that a certain genetic trait, or PKD “marker,” has been passed along, it can predict the chances that an undiagnosed relative may have PKD.

  • Direct mutation analysis: Instead of comparing your DNA with family members, direct mutation analysis looks at the “sequence,” or structure, of your DNA. The test then compares it with DNA patterns commonly found in people who have ADPKD and those who don’t have the disease. People may choose this test if none of their family members can be tested.

ADPKD screening before the age of 30

If you were screened for ADPKD before the age of 30 and did not show signs of ADPKD, you may still have the condition. Ask your healthcare provider if getting screened again may be appropriate.

ADPKD and pregnancy

If you are considering having children, it's important to know that women with ADPKD can still have healthy pregnancies. However, this disease can make the decision to have children more difficult.

YOUR ADPKD HEALTHCARE TEAM

ADPKD is a complex condition. That's why you might want to consider having a variety of healthcare providers in your treatment team, including:

Nephrologist: This doctor specializes in kidney care. He or she will not only confirm diagnosis, but may also be involved in your care once diagnosed. The nephrologist helps monitor the progress of your disease as well as manage any complications that may come up. As the condition progresses, he or she will likely manage your care during and after the dialysis and transplant stage.

Primary Care Physician (your regular doctor): Keeping your kidneys healthy is only one part of your overall care. You should also continue to get regular checkups with your doctor.

Nurse: He or she will assist your doctor and answer many questions you may have. A nurse may also be the one who tests your blood.

Radiologist: This doctor specializes in using imaging to diagnose and treat patients. He or she can track your ADPKD and share the results with your nephrologist to help make decisions about your treatment.

Nutritionist: This person can recommend proper eating habits.

Cardiologist: Heart problems and high blood pressure are major concerns for people who suffer from ADPKD. This doctor will help monitor your heart function and blood pressure, and offer tips for managing both conditions.

Urologist: This physician specializes in the urinary tract and is generally not involved in the treatment of ADPKD. But he or she may become more involved if you develop any urinary conditions. A urologist may also recommend screening for undiagnosed family members.

Your doctors can give you advice on managing symptoms and even help you take a more active role in your treatment.

Getting support from your ADPKD healthcare team

Each member of your ADPKD healthcare team is a great resource for support. They can give you advice on managing symptoms and even help you take a more active role in your treatment. They are here to answer your questions, no matter how big or small.

Here are some tips to get the most out of your ADPKD healthcare team:

Talk to them about how you feel: Be open and honest with your ADPKD healthcare team. The more they know about what’s going on, the more help and support they can provide

Keep a journal of your health and symptoms: Tracking your symptoms and how you feel can help your ADPKD healthcare team know what you’ve been going through between appointments. This helps them make the best decisions about how to support you.

Ask questions: Don’t be afraid to ask anything that’s on your mind. The more you know about ADPKD, the better you can be at managing the disease.