Working with your doctor to find the cause of your kidney disease

Prepare for your visit 

• Write down your symptoms and how you have been feeling overall. Include as much detail as you can, such as if your symptoms are worse at a certain time of day. Remember that you may not have symptoms of kidney disease until your kidneys start to fail.  
• Bring a list of any medicines you take, including herbal supplements and over-the-counter medicines (such as pain relievers). You can also bring your medicines with you to your visit. 
• Write down your questions and put your two to three most important questions at the top of your list. 
• Ask a friend or family member to come with you for support and to help you remember information. 

During your visit 

Give and get health information 

• Go over your list of symptoms with your doctor and tell them about any changes to your health. Give as much detail as you can, even if it does not seem related to your kidney disease–anything may help find the cause of your kidney disease. Learn more about how to share your symptoms with all your doctors. 
• Ask your most important questions first. Start with the two to three questions at the top of your list to make sure there is time to answer them.  
• Take notes so you can look up information later. You can also record the conversation on your phone if your doctor agrees. 
• Ask for resources to learn more. Your doctor may have brochures, factsheets or links to trusted online sources where you can do more research.   
• Ask what the next steps are. Before the end of your visit, make sure you know what you need to do next. For example, your doctor may ask you to: 
  • Get tests, such as blood tests and urine (pee) tests 
  • See a specialist, such as a dietitian (a person with special training in food and nutrition to know which foods are right for people with kidney disease) 
  • Keep track of any changes in your health until your next visit 

Questions to ask your doctor during your visit 

• What could be the cause of my kidney disease?  
• What have you ruled out as a cause of my kidney disease? 
• What tests have you done to try to find the cause of my kidney disease?  
• Are there any tests we have not done yet? Should I have genetic testing? 
• What can I do to keep my kidney disease from getting worse while we keep looking for a cause? 
• Should I be looking for any other symptoms? If so, what are they? 

Tips to make sure you understood all the information 

You may get a lot of new information during your visit, and your doctor may use words or talk about concepts that are new to you. You can: 

• Ask follow-up questions if anything is unclear. Do not hesitate to ask your doctor to repeat information or use different words to explain a concept.  
• Repeat information back to them in your own words. For example, you might say: 
  • "I want to make sure I understood. You want me to […]. Is that right?" 
  • "I think I heard you say […]. Is that correct?" 

When and how to get a second opinion 

There may be times you may want a second opinion from another doctor or a specialist with a different background. Asking for a second opinion does not mean you do not trust your doctor or are unhappy with your treatment–it is simply a way for you to take charge of your health care and make sure you are exploring all your options.  

When should I get a second opinion? 

Consider a second opinion if: 

• You are unsure about a diagnosis you got from your doctor. 
• You and your doctor have been trying to find the cause of your kidney disease for a long time and you would like to take a new approach. 
• Your doctor suggested a new treatment and you would like another opinion to decide if it is right for you. 
• Your doctor is unwilling to learn or explore other options to find the cause of your kidney disease. 
• You do not trust your doctor or feel they are a partner in your care. 
• Your doctor does not include you in decisions about your care. 

How do I ask my doctor to help me get a second opinion? 

In most cases, your doctor will respect your wish for a second opinion and will be able to help you. Here are some questions you could ask: 

•  "I am thinking of getting a second opinion. Can you recommend someone you trust?" 
• "Before we start this new treatment, I would like to get a second opinion. Can you help me with that?" 
• "If you had my symptoms of kidney disease, is there another doctor you would see for a second opinion?" 

Contact your insurance provider before you get a second opinion to make sure your plan covers the costs.  

It can be hard to talk with your current doctor about getting a second opinion. See more tips on when and how to ask for a second opinion.