As kidney function declines, it's normal to have questions about what comes next.

Many people with PKD want to feel informed and prepared, but aren't always sure what to ask during appointments. The questions below can help you better understand your nephrologist's thinking and what to expect in the years ahead.

Remember: every person's PKD journey is different. Your nephrologist is the best person to explain how these questions apply to your situation.

Understanding Your Kidney Function

Instead of focusing only on a single eGFR number, try asking:

• What signs or trends are you watching most closely in my case right now?
• Looking at my recent bloodwork and kidney function, what stands out to you?
• What changes would make you think my kidney disease is progressing more quickly?

These questions can help you understand how your nephrologist is assessing your overall health.

Understanding What Comes Next

Many people wonder what the future may look like.

Consider asking:

• If everything continues as expected, what do you think the next few years of care might look like for me?
• What milestones are you watching for over the next year or two?
• What should I be prepared for as my kidney function changes?

These questions can help you build a clearer picture of the road ahead.

Learning About Transplant

For many people with PKD, transplant planning begins before dialysis is needed.

You might ask:

• At what point do you usually start discussing transplant evaluation?
• Based on where I am now, when should I begin preparing for transplant?
• Is there anything I can do now that could make the transplant process easier later?

Learning About Dialysis

Even if dialysis may still be years away, understanding your options can reduce uncertainty.

Consider asking:

• How do you decide when it's time for someone to start learning about dialysis options?
• What signs tell you it's time to begin planning for dialysis access?
• Are there resources you recommend for learning about dialysis before I need it?

Understanding Symptoms

Kidney function numbers are important, but so are symptoms.

You might ask:

• What symptoms should I be paying attention to?
• What symptoms would you want me to contact your office about right away?
• How much weight do you place on symptoms compared with blood test results?

Staying Prepared Without Feeling Overwhelmed

One of the most helpful questions you can ask is:

"If I wanted to be well-prepared without getting ahead of myself, what would you suggest I focus on right now?"

This can help you focus on practical next steps instead of worrying about every possible future scenario.

A Final Thought

You don't need to ask all of these questions at one appointment.

Choose one or two that feel most important to you right now. Over time, these conversations can help you better understand your care, feel more prepared, and build a stronger partnership with your nephrologist.

Being informed doesn't mean expecting the worst. It means understanding your options and feeling more confident about what comes next.

Download a PDF of these questions

Note: This resource was created with the help of AI and reviewed by PKD Foundation of Canada staff. It is for educational purposes only and is not intended to diagnose or treat PKD, or replace advice from your healthcare team. Always consult your healthcare providers about your own care.