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^"How do I find a doctor to assess my kidney size?^"

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^"How should I prepare for my doctor’s visit?^"

Once you’ve been diagnosed with ADPKD, you may want to consider having a variety of healthcare providers on your treatment team, including a:

Nephrologist:

This doctor specializes in kidney care. He or she will not only confirm your diagnosis, but should 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.

Primary Care Physician:

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 any 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 people. 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.

The relationship between your nephrologist and PCP is especially important

ADPKD is a form of chronic kidney disease (CKD)
Adults with CKD who are managed by both a primary care physician and a nephrologist are more likely to have their CKD progress and complications more closely monitored
This is especially important for Black and Hispanic people. A study has shown they are significantly less likely to see a nephrologist before end-stage kidney disease

When speaking to both doctors, make sure your nephrologist and primary care physician are communicating and working together.

^"How can my healthcare team help me?^"

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.

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 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 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.

Partner with your nephrologist

Talk to your nephrologist about his or her experience treating ADPKD, as some have more experience than others. You may have a choice to select a nephrologist who understands your disease and is aligned with your goals.
Find one who is proactive in your disease management goals and can help you discover a treatment option for ADPKD.

ADPKD=autosomal dominant polycystic kidney disease.

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